Wonder lust

All of my life I dreamed of traveling to far off places. Mystical places with smells of spice and sounds of unfamiliar languages. I dreamed of visiting Egypt, Rome, Greece, India, and other far off lands. I always envision starting my journey in England. Visiting London and touring English historic sights. This would be my way of stepping a safe “toe” in to the proverbial tourist lifestyle. I figured visiting an English speaking country just to see how I handled travel would be the best way to start. Then I would venture out to the rest of the world.

Have Rheumatoid arthritis and fibromyalgia has put that dream to bed.

A few years ago I wanted to walk the US. From Florida to California. I would travel to southern route in the winter and the northern route in the summer. Even at the time, I knew there would be no way I could even begin this journey. I couldn’t even walk a mile back then with out such pain. If I tried to walk more than a mile ( if I was having a good day), I would pay for it the next day with my knees being too sensitive to touch or my hips feeling like they were out of the sockets.

Being an athlete previously, a woman who ran 5 to 7 miles every day and then did power yoga after that…. well, it still baffles me that I can no longer be what I was.

I used to have patients come in an complain about Lupus, RA, Fibromyalgia and other painful conditions. I would just think, ” well, they just are not trying hard enough.”

What an ass I was. In the athletic community, no pain, no gain is more than a saying. It’s a way of life. I would push through fatigue, joint pain, back pain, mensural cramps, dizziness, the flu. Running was Life for me.

It was a fight to give it all up. I am an overachiever who can no longer achieve. I think I finally cane to terms with this fact two years ago. And now I have come to terms with the fact that I will probably never travel. I have only been out of the US twice. Once as a child we took the train to Canada to visit my aunt. And once as an adult my husband and I went to Vancouver when we lived in Seattle.

My husband has a solution to my travel problem. He suggested that I watch walking tour videos on my tablet with headphones on. If I emerged myself into what I am watching, it may feel like I am there.

So I started with London. So far it’s fun. My husband and I watched a walking tour of Pompeii. It was educational as fun. I think it was better than being there because I was warm, safe and dry at home yet I got all the best of travel while at home.

I now have a new hobby. The only downside is that I keep falling asleep 20 minutes in or I zone out. It’s helping me work on my concentration issues. Plus, when my anxiety gets bad, these travel videos take me away from that, well, most times.

I am so very thankful for people who upload these videos to YouTube. I don’t feel so isolated.

I still have yet to hear form Social Security on my hearing. I looked online and it says a decision has been made on my hearing and they are working on getting me the answer.

The waiting it terrible. My heart is in my throat.

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No sleep till…

It’s 2am and once again I am up. I spent yesterday being horribly dizzy. I hate when I get dizzy. It’s not just dizzy, it’s vertigo. It sucks.

My Rheumatologist lowered my methotrexate because my white cell count dropped too low. I feel it! I have pain. Oh my do I.

My daughter has decided to go to college in Portland, Oregon. It is literally on the other side of the country. She did admit that she is running away from her life in Florida in the hope of getting an actual life in Oregon. I told her the old saying if “where ever you go, there you are”, that my dad said to me. She gets it but she is still going.

I get it. She is 21 this April and has never kissed a boy (or a girl if that’s what she wants). She is lonely and has no friends. She is a tall and beautiful girl. I am shocked she is so alone. She told me she is A-sexual. She always dresses as if she is a nun too. I live that about her but now a days every one wants the slut and that’s not who she is (thanks goodness).

I don’t remember if I write about my disability hearing or not, well, it was quick. The judge was professional and the occupational person said there was no jobs that I could do. My attorney said we won and I was approved. However, I don’t trust that until I have the approval letter. It’s very stressful. If I were approved it would be amazing. I could buy medications and maybe see a real doctor instead of the indignant clinic. (I am not complaining. I just want a forever doctor). My blood work cane back positive for Lupus again. My Rheumatologist says it’s medication induced and not real. I don’t know.

All of this is very stressful. When I get stressed I get dizzy. Blahhhhhhh. My one blessing presently is my husband. This man is great. He is so loving and comforting. I got lucky with him.

Met with my attorney

I met with my attorney today. She was pleasant. She speaks three languages, she is smart. However, it makes me question why a smart woman who worked for the government in international relations would want to work in my hoedunk town. Hummmmmmm…………

I am trying to keep myself calm. I tend to get agitated and talk fast when I am scared. Plus, in tense situations I get the shakes like I’m cold and I begin to shiver uncontrollably and chatter my teeth. It’s weird. If I keep calm then I am ok. So I am trying to remind myself that it is what it is and I have no control over it. This calm may change when I try and go to sleep. My monkey mind takes over and then my anxiety starts and then I become so afraid of panic that I begin to panic.

It’s dark and cloudy today. The house is quiet. I feel lonely and sad. I miss going out and being part of the world. Sometimes I can go on you tube and watch travel videos to feel better.

My daughter got a part time job in a smoothie shop. She plans to leave and attend college at Oregon state to study anthropology. I am jealous and hurt all at once. I know taking care of me is tough on a 20 year old. She doesn’t have any friends and she has never had a date. She is so beautiful, I don’t get it. Maybe leaving and being on her own will open her up to love and friends. I so want her to have a good life. I will miss her terribly. My eyes are tearing up just thinking about it. Plus, she turns 21 in April. Where did the time go.

My chest hurts

Today I feel like I have the flu. My chest aches and it feels like I am breathing water. It’s cold too…., well it’s 50 degrees here in Florida. That’s cold for us.

I attempted to make a box cake for my son. His 19th birthday is Monday. I know he will be busy every day until then, but today he just had school in the morning so I decided to make his something special. My daughter ended up finishing the baking and icing if said cake. My hand could not lift the darn mixing bowl to pour the batter into the pans. I then realized my daughter needs practice of any kind when it comes to baking or cooking. My son is surprisingly good at cooking. So she finished the cake. I sat there and ate left over frosting.

It’s dark and overcast today. My ears are ringing loudly and I feel like crap. I really want to go to bed. I probably will end up doing just that. I feel like my life is slipping away while I lay in bed. My hips and lower back ache something fear. I long to go hiking in some far off trail with sights I have never seen. Across bridges and forests and soft green fields. A long 12 hour hike. I would look at the blue sky, listen to birds and not speak. Just listen. I miss hiking so very much. I miss being outside and exploring new places.

When it became too much for me to even walk, I would watch YouTube videos on hiking. Hikes through Scotland, Africa, England, the hike from Mexico to Canada, I forgot it’s name. Hikes through the US or my jam. I used to read books about hikes and about people who hiked around the world. Now I zone out after the first chapter or I fall asleep if I make it through the first page. Even now I am becoming drowsy just writing this. Plus I keep making mistakes and spelling stuff wrong.

I used to be smart. I was quick and on the ball. I can remember how it felt to be so good and so clever. Now I fear I am an airhead. I would think to some folks that would be funny, to me it’s upsetting. I remember patients coming into the clinic complaining of fatigue and brain fog. I used to think, “well we are all tired folks.” I was a fool. This kind of fatigue is no joke. It’s painful even. Plus I loose track of what I was talking about all the time. What the wholly hell!!

I have spoken to my doctor about this but she just shrugged. I have learned to take her shrugging as “it’s all par for the RA/fibromyalgia course.” Wel. I don’t like this course. I wish I knew what I did to cause this. No one in my family has RA. I used to run. I ran every day, even when I had the flu, even with menstrual cramps and tooth aches. I ran 5 miles everyday. On the weekends I would go 7 to 10 miles each day. For a while there I did 17 miles just on Sundays and 5 miles all the rest. Plus I did power yoga and 30minutes of weightlifting. I was so ripped and thin. I could do anything back then. I was admired and envied. I was respected in the running community too. I fought so hard to keep at it but the fatigue and the pain became unbearable. I thought if I just kept running I could out run Rheumatoid arthritis. Instead it ran over me. I waited too long to start medication because I was in denial. Not once did anyone say, “hey, you should really slow it down and start a medication.” Everyone just cheered me on.

Now everyone’s gone. When you are not beautiful and strong anymore, you loose your luster and people toss you away like a bad penny. I am lucky my husband still loves me. He is like gum stuck in your hair. You just can’t get him out, and I love him for it.

My kids and I were talking about how my disability has made them stronger. They can now do laundry, pay bills, cook, clean, etc. now that I can’t. They learned at home what happens when you don’t do the dishes before bed and you slack on the laundry. I am glad they learned at home and not with a roommate or spouse. Fighting with others because you or they are slobs sucks. I hope I have saved them if this.

My disability attorney called me this morning. They are having difficulty getting some of my medical records. He kept going on and on about how expensive they are and how I will be billed for them. I am afraid how much this will cost me. I get to meet with the attorney Tomorrow morning to discuss my hearing on Tuesday.

Both my arms and hands are tingling like they are waking up from being numb. I am done ranting for today.

First posting

I got the idea of a blog through another blogger. I can’t afford to see my therapist anymore. I did really love my therapist. If I do get approved for disability, I will have the funds to go back and see him again. He was the first therapist I actually liked.

I have rheumatoid arthritis, tinnitus, fibromyalgia and anxiety that becomes depression if I get to far in.

At present my stress level is high. This has kicked the depression in. My body aches today and my head is throbbing.

My hands are stiff while typing this. The only good thing because I slow down and think before I type instead of just going off and ranting.

I am sad today. I used to try to find reasons for my depression. My mother would yell at me asking what reason do I have to be depressed. Now I know that you don’t need a reason. Depression is just a hiccup in brain chemistry.

Anyway, my disability hearing is next Tuesday February 5th. I have been waiting 18 months for this hearing. My attorney sucks. They told me that they would meet with me before my hearing to discuss my case and the judge. So far I have heard nothing from them. I get the feeling they don’t care or they don’t think I will be approved.

I am afraid I will not be approved too. I see an poor folk free clinic for my care. I bet they don’t chart well. I can’t make the judge feel my pain or fatigue. I can tell my doctor until I am blue in the face but she just looks at me with pity. It’s frustrating. I am so tired and my hips hurt.

I miss going outside. I used to me a strong, slim runner. I ran 5 to 7 miles every day. I also did power yoga daily and worked at a job where I would walk 3 miles a day, up and down the hall. Now I am fat and I can’t even walk a mile. Pain in my hips, ankles and feet become overwhelming. Plus I turn 50 in March. People keep telling me I am too young to be so broken. I went from overachiever to looser in 3 years. I fought this too. I kept doing my super physical job even after I stopped running in 2012. I was the breadwinner for my family. I was a star employee. I loved being on top. Now I can’t even walk my neighborhood. We had to file for bankruptcy a few years ago after I stopped working. I lost my house too. Why would anyone want that. Why would anyone want to be disabled just to loose everything I worked so hard for. I loved that house. It was perfect for me. It still breaks my heart to think about it. Plus, I had to re-home my dog and cat because I couldn’t find a rental that would let me have pets or the pet deposit was too high. Loosing that dog haunts me. I know the cat is in a good home but the person who took my dog will not respond to my emails. I should have kept them and just made it work. Now I live in a trailer in the middle of nowhere. I never thought this would be my life.

It’s embarrassing to be disabled. People look at me because I use a walker and a cane. I hate the attention. I try not to us the handicap parking because the old folks yell at me even though I do have my own placcard. I get nasty looks from folks who look way better off then me. They walk better too. It’s frustrating.

I am lonely too. I have my husband and my adult children but it’s not the same as girlfriends you can hang out with and laugh with. I miss having friends. my old friends don’t want to hang out with a person who is limited. Plus I don’t drink alcohol or do drugs so I am no fun. It’s hard to find people like me who get joy from museums or craft fairs.

That’s enough for today. I doubt this will ever be read. My hope is that it will be read by someone who can give real advise. But really it’s just a place to vent for me.