It has been a long time since my last blog post.
I want to take the time to thank you for continuing to follow my posts.
The last year has been very difficult for me.
There has been many funerals of loved ones and old friends.
There also has been many losses and much sickness.
For those of you who don't know what I mean by sickness, I am referring to my
fibromyalgia. I was Diagnosed in October of 2008. I have had my ups and downs with the illness and I have finally reached to point where I cannot work anymore. The smallest amount of stress or the smallest germ breathed on me and I am down for the count for at least a week. There are also tons of separate medical conditions I have which are actually considered fibromyalgia symptoms.
Some of them are:
-severe allergies
-salicylate intolerances (no touch plants and their extracts for me)
-chronic fatigue
-insomnia
-migraines
-wide spread nerve pain
-arthritis
- TMJ
-muscle weakness
-memory impairment
-- Raynauds syndrome
Due to all the problems the fibromyalgia has caused me I hardly have an immune system.
Within the last year I have had walking pneumonia, lots of sinus infections, bronchitis, and strep throat. I also had some kidney stones.
Almost a year ago the man that I loved and thought I would spend the rest of my life with decided that he couldn't handle me anymore. He knew about my fibromyalgia from the get go, but it seems he couldn't handle it. He never said that word for word, and he refused to tell me why by saying there wasn't a reason. He said many horrible things to me. Things that a person should never say to anyone. As my stress level increased dealing with everything my fibromyalgia kept acting up and I had to miss tons of work. The boyfriend thought that I was fine because I look fine and that I was making up excuses to not go to work. He truly didn't understand that fibromyalgia is an invisible illness. Just because a person looks fine, it doesn't mean that they are. Out of this mess I was extremely lucky that his parents still love me and accept me as a friend.
Upon him moving out and taking all his belongings and a few things that were actually mine, people started talking and spreading rumors. The next thing I know is there are people breathing down my neck about talking shit about my ex. I didn't of course. I wanted to, but I kept my mouth shut in an attempt to be civil. Thanks to the trash talkers that was impossible.
In the midst of all this was an adorable little girl that got hurt. I have been in her for over half of it.
She is now four years old. The ex's daughter. She was very confused and very hurt. It finally got to the point that her mom and step dad decided to invite me over for dinner and to see the little girl.
They decided it was important to keep me in her life no matter what.
So every so often I go to their house to hang out and have dinner.
I am so blessed to have been given the opportunity to stay in the little one's life and for her mom and step dad to be so understanding. As a result of this I made two new friends. I am glad to have the little one's parents in my life.
Shortly after the ex moved out I lost my job due to attendance issues from my fibromyalgia and from the other illnesses I kept having. It was at this point that I realized that my fibromyalgia had basically taken over my life. I couldn't socialize with my friends like I used to, and I couldn't go hiking anymore. I had to sacrifice almost everything I loved to do. This included having a job.
I have found some things I love as hobbies and have been using them to keep busy. I started an all girls D20 gaming group. Lately they have been having to game without me. :( I have also rediscovered and embraced my artistic side. I have been making steampunk jewelry, art décor, and been painting. I have also started to practice my violin again. I have even played model for my photographer friend to use to promote his business and my steampunk goods.
This December will mark the one year mark of when I applied for social security disability. They are dragging their feet like usual so I have not heard anything back yet on my latest appeal. If this one doesn't go through it will be time for me to lawyer up.
During this time my loving parents, my two brothers, and many of my friends and family have been giving me the support I need financially and emotionally. Some of them have even gone above and beyond the standard to help me out. Some of them have sent me gift cards to hobby stores to work on my art and steampunk goods. Some have come and cleaned my dishes or clean my house. Others listened to me and let me vent out all my frustrations. One friend even attempted to make special cupcakes through her business to try to help raise money for me to try non-traditional holistic treatments.
I have been on the same treatment plan since 2008. It works for me better than no treatment at all.
I cannot take narcotics or anything with codeine derivatives as I am allergic to them. So I make due with what I can. Most mornings are difficult, but I always find a way to get up and make myself do something. It could be cleaning something, an art project, or even just laundry. When the weather is nice and my pain level is low I always try to go for a walk to some mild exercise.
When I have time I spend most of my day researching articles on fibromyalgia on the internet, and also information on different non-traditional treatment options. It is my desire to find something that will work with my treatment plan and allow me to get part of my old life back. I don't know if I can or if anything will work. I have been able to use some of the information I have found to help others with fibromyalgia out. Everyday on Face Book I talk about my fibromyalgia and what it is doing to me that day. By doing this I have been able to educate people about fibromyalgia, and I have even helped a lot of them get diagnosed. Those already diagnosed and struggling I have been able to refer to my Physician Assistant (whom now is a good friend) to start a treatment plan.
Sadly after all the years fibromyalgia has been around there are many doctors, nurses, PA, and people who don't think it is a real thing. Due to this there is a huge stigma about fibromyalgia and so many times people are told it is in their head, it isn't real, or that they are in fact hypochondriacs. I am doing what I can to help end it. I am not embarrassed or shy about my condition like many people are. I stay very open about it and as a result of I have made a difference.
There is a gal in California that I have met through an online support group. I have become email buddies with her. To give you an idea of what I mean by stigma her story totally shows it. For this I am going to call her Jill.
About 7 years ago Jill got diagnosed with fibromyalgia. She couldn't figure out what to do and the doctors she saw kept telling her to suck it up and deal with it just like normal people do. During this time of constant pain her parents, siblings, husband, and all her children walked out of her life refusing to accept that there was a problem and that Jill just was seeking attention and coming up with excuses to not do things. Her entire support circles crumbled before her.
Luckily for Jill she had a few good friends. Thru those friends she made more friends. She was able to make a new support circle. Over the next five years her friends took care of her. Every week she would move from couch to couch. She also found a treatment plan that helps her. The same one I am on! Anyways, finally after five more years her disability claim was finally approved. She now has her own place, and has many wonderful friends to check in on her.
I have been extremely lucky. My whole family is supportive and have been helping take care of me and my bills until the disability claim goes thru. I also have many supportive friends who I can always count on for help or just to vent to. I cannot imagine how hard it would be to have to make new friends and to have your whole family walk out on you. I am truly blessed.
The last two relationships I have had failed in part to the fibromyalgia and me not being able to do many things. At one point I had even stumbled across some Riddle's Jewelry statements and an engagement/wedding set. I never told the boyfriend that I had seen them. I never received it. As a result of all of this and all the articles I have read about fibromyalgia and relationships I decided that I no longer want to date, unless it is someone very special that changes my mind. So I have been single for almost a year. My parents support my decision and back me up when someone tries to convince me to date someone they know.
The last three weeks have been hard on me, but have also been good to me.
One of my best friends lost her mother. I was lucky enough to have been their for her in her time of need. I was with her in the ICU room right after they took her off of life support. I was able to hold my friend and console her as the last signs of life in her mother vanished. She was an amazing woman. It was very sad, but deeply beautiful at the same time to watch. I can honestly say my outlook on life has drastically changed.
Another friend of my has been taking so many emotional blows that it isn't even funny. Most of her friends have bailed out on her because they are to conceited or self centered to just let her vent and offer advice when needed. She has lost not just friends, but her boyfriend, and her job. She has bi-polar and short term memory loss. She was in a horrible motorcycle accident a few years back. It changed who she is and no one seems to care. I care. I know exactly what that is like due to my fibromyalgia. My friend lives just a few doors down from me. So we spend lots of time together.
In this way we are actually helping each other through our problems.
I also may have found someone special. I have had a secret crush on him for twelve years. We have been friends for a long time. We have recently been texting and have talked on the phone a few times. He is going to be coming to Rapid City in a few weeks and wants to hang out. He is aware of the crush as I just through it out in the open. At first I thought that was rather stupid of me, but as it turns out he had a crush on me way back when. Only time will tell. I don't know what could happen with this, but at least I know he will always be my friend.
