Sunday, November 23, 2008

cold,dreary,days..not so much.. well not the dreary part at least

Today was one of those days where you just don't want to get out from under the security and warmth of your blankets and do nothing all day long. But alas, there are things that must be done. Our family had to go to the grocery store this evening as we were low on sustenance for the week. we are gonna have a rough week this week. My husband has a job but they are shutting the plant down for a week for Thanksgiving, without pay. This seems so unjust to me. They are doing this the week of Christmas as well, possibly the week after Christmas too. How are their employees supposed to make it?? I myself am not able to work, and I am in the process of applying for SSI. This makes it even harder. If i could find work doing something from home that I know would pay at least minimum wage and that physically I can handle, I would do it. On a much happier note; I am seriously looking forward to the Holidays with my family. I can't wait. i honestly love the weeks before Christmas and watching all of those Christmas movies on TV. During those weeks especially on the weekend.. we love to make big pots of soup, chili, or beef stew. With biscuits, or big loaves of chewy baguette bread. Then a hearty dessert like Apple walnut crisp, and curl up on the couch with some hot tea, or cocoa and watching a marathon of Christmas movies. We LOVE IT! I look forward to sharing some of these wonderful times with you, and would love to hear from anyone out there in blogger land who has stories to share of Holiday/ winter weather bliss!!

Thursday, November 13, 2008

Yesterday, Tomorrow, Today

I am always thinking. Thinking about yesterday, what happened and how I handled it. Thinking about tomorrow, what am I going to go through and how am I going to handle it? When you have a disease like psoriatic arthritis you never know how you are going to feel from one day to the next. So life is a waiting game. I usually can't make any plans too far ahead. The only plans that I can make are my doctors appointments because I have to go to those.SO if I have a good day I try to make the best of it. Which is actually kind of hard believe it or not. When a day comes where I actually feel better, I have to try to rearrange life to be able to do things I normally either can't do or aren't up to doing. Today I am feeling better, physically. I could be better emotionally but I am a bit frazzled by the fact that my husband has to work, and can't seem to be able to get out of it. So, on a day where I feel better and want to take full advantage of the day, I can't. Not to mention, I want my husband near me right now. I love him so much. And when I feel better I actually don't want to be away from him. When my days are going rough like usual, I always feel so guilty for not having more to offer him every single say.
I am so blessed to still be with THE ONLY MAN I have ever truly been in love with. I feel like these days when I feel better I can use the day as an opportunity to refuel on the joys in life. Kind of like a camel filling up and using it's hump when food is scarce, I fill up on the joys and fulfilling things and use my heart and memories (or my hump..lol) as a source of joy when the times are scarce. Now don't get me wrong.. I have many sources of joy that still exist when I am having a bad day but I am talking about the things that I rarely get to do. Things that bring a lot of joy to my family, and I. The things that healthy people take for granted. Things that families with healthy family members take for granted. Like being able to go to dinner and enjoy yourself, or putting up our Christmas tree, taking the dogs to the
dog park. So many things to do not enough time to do it in. I have spent the last week since I started writing this post trying to reconnect with my husband. And don't get it twisted, it's not like it sounds. My husband and I always spend time together and there is always a degree of closeness. But that closeness is always somehow been held in place by my disease and all that goes with it first..then our love; and, I don't like that feeling. So what I meant by reconnect was I have been trying to spend time doing things with him that didn't involve my illness, or our finances. Doing things that focus on us. Like what we used to do together when we first started dating, when there was nothing in the world to worry about but just being with one another. I love this man with all my heart. And I am going to spend every chance I get making sure he knows that. I guess one thing I can say is I have to learn to move on and learn from yesterday, look forward to tomorrow, and live for today.
Until Tomorrow! God Bless, Peace and Love-Tress

Monday, November 10, 2008

Todays Doctor visit

Todays visit went pretty well. There isn't too much change in my overall condition, but my psoriasis is a little better on my arms. I always have a monthly checkup as long as I am on strong pain meds, because Morphine is a controlled substance that cannot be refilled over the phone. But I got a new prescription for a drug called Neoral, which is a form of another medicine called ciclosporin that I am not familiar with.. so more about that later. Basically it is a type of systemic drug treatment that is meant to reduce my symptoms. There is no cure for Psoriasis or Psoriatic Arthritis for that matter. So, that is kind of my hope in doing this blog that hopefully I can make a small difference in getting out awareness of my disease. I am so frustrated with how little knowledge there is out there. I read something online that someone wrote and I don't think that I have heard it said better. There is such a stigma among people who do know about psoriasis/ psoriatic arthritis that because of the way it looks people think it is some horrible contagious disease. But this person wrote that when you have psoriasis people treat you not like you have a disease but that you are a disease. It is an awful feeling to feel. And you know the sad thing is it isn't just strangers who make you feel like that. It can be people you know, people you love even. And it isn't necessarily that they mean to make you feel that way. Some people are just ignorant to the fact that psoriasis is not contagious and that it is not something that means you are a dirty person. They are ignorant to the fact that most people are really self conscious about having psoriasis. It is really hard to handle at times. But it is up to those of us who suffer from this disease to educate people. Because obviously our tax dollars aren't doing it. The truth is that this disease affects between 6 - 7.5 million Americans. It is a chronic disease that can be debilitating. Not to mention the emotional and psychological toll it takes on people. Psoriasis affects a patients quality of life, their relationships, everything. I can HONESTLY say without a doubt that every area of my life has been affected by this disease in one way or another. my husband and I aren't intimate as much as either one of us would like because of how bad I feel physically, and because I have a lot of issues with my body image. it is definitely hard. And then there are the issues with me feeling inadequate because I am not doing near as much as I want to do to help out, and he gets very frustrated with me as well. I know that ultimately he knows that it isn't my fault, but a person can only take so much. And he is really good to me. He always takes me to my doctors appointments. He makes sure we have what we need by providing for us, and he will never be able to know how much I love him and how much his support, love, and companionship means to me. We really do have a special, unique relationship. We can make each other laugh even in the most difficult and stressful times. And that is one of my favorite things about "US". He knows when I am truly having one of those days, where enough is enough, and it has all just gotten to be too much. And I have those days more and more the longer I live with this disease, and the more the disease progresses. I just realized it is weird. Usually when you think of progress you think of something getting better, or growing in a positive way. But when you are talking in terms of a medical condition progressing usually means getting worse. It means to me that the disease is advancing, growing in terms of severity. Just a thought. But back to My Husband, he knows when I am having one of those days. Usually no matter how bad I feel, I try to be happy, friendly and make the best of my day. I love together time with the family. but when I am having a really bad day, I usually cry a lot, i can't get around easily, I don't eat or drink much. And occasionally I can be irritable. But that is rare. I am usually a pretty calm, laid back, person who is friendly no matter how bad I feel. But there are days where I feel so bad that everything can really get under my skin. One thing that I am surprised I haven't mentioned yet; that is a big thing with psoriasis sufferers is...THE ITCHING. Psoriasis can drive you crazy with itching. And sometimes NOTHING will ease it. It is impossible not to scratch. I have scratched until I bled before. And when your skin is so thick and dry that it gets huge deep cracks, scratching the itchy areas can be very painful. And scratching in public is so humiliating.Because a lot of times when you have to scratch it isn't just a little itch. It is something that can go on for hours or all day. Benadryl used to work for me but not anymore, I've had to use it too much. So that is another issue. Well, I am getting tired (yet another one of the joys of psoriatic arthritis) so I am going to take a rest. Until Tomorrow! God Bless, Peace and Love- Tress

Sunday, November 9, 2008

Day before my next Doctor's appointment

It is 4:26 AM Sunday. I have an appointment with my Rheumatologist on Monday morning. The few days before appointments are always rough on me for some reason. But, before i get ahead of myself let me explain why I see a Rheumatologist. I have a disease called psoriatic arthritis. It is a sometimes debilitating Auto- Immune disease that affects the joints and skin, including fingernails. The Mayo Clinic (www.mayoclinic.com) offers this definition:
Definition

Psoriatic arthritis is an inflammatory condition that affects the joints of children and adults with psoriasis. Psoriasis is a skin condition that causes patches of thick, red skin to form on certain areas of your body. Not everyone with psoriasis develops psoriatic arthritis, but everyone with psoriatic arthritis has psoriasis.

Most people develop the skin signs of psoriasis first and are later diagnosed with psoriatic arthritis. Joint pain in people with psoriatic arthritis can range from mild to severe. Many experience changing signs and symptoms as the disease continues.

Many definitions of psoriatic arthritis exist, which makes it hard to estimate how many people have the disease. About 10 percent to 15 percent of people with psoriasis eventually develop psoriatic arthritis. While no cure for psoriatic arthritis exists, doctors work to control your signs and symptoms and prevent damage to your joints.

I myself did develop signs/ symptoms of psoriasis affecting my skin about two and a half years before I developed any signs or symptoms of psoriatic arthritis affecting my joints. When I first got psoriasis on my skin it was minimal; just a few small patches on my forehead, and my scalp were affected. But it was still humiliating when people noticed these bright, red, scaly, spots on my forehead. My father spent a lot of money he didn't have to take me to a dermatologist who gave me prescriptions for creams and solutions that Dad had to spend even more money on that he didn't have.
My father was genuinely compassionate and I could tell he felt really sorry for me, but I also sensed I embarrassed him.(This would later become a trend amongst my loved ones.) I was 17 years old, and while it is hard for all 17 year old to fit in, it was extremely hard when i felt like a leper. My parents were going through a divorce during this time so it was really stressful, and stress does aggravate psoriasis. One person who always made me feel better was my aunt Eva. She used to scratch my scalp and help me wash it good when it would get really bad. I lived with her for almost a year before i turned 18 due to the family problems. Aunt Eva passed away in 2006, and it sounds crazy, but one of my fondest memories of her are of her scratching my scalp and us just talking and being close like we were. She never judged or acted above me. When I was 18, getting ready to turn 19 I met Tommy who is now my husband. I will never forget the first time he noticed the red patches on my forehead. He stopped by to visit me, before I could put the makeup on that I usually wore to cover the psoriasis. I had just gotten out of the shower and when I showered the water usually made the redness a lot worse. So it was pretty bad. Tommy, never seeing anything like this before in his life, said,"Oh my God", what happened to you?" He thought I had burnt myself badly with a curling iron. I was so hurt and embarrassed. I got upset with him for saying it like that, but later I realized that I would have probably reacted the same way seeing something like that. When I explained to him what it was he calmed down a bit. A month or 2 later I was pregnant. Something strange happened when I got pregnant. My psoriasis disappeared. I felt so free. Not having to put makeup on as soon as I woken up or showered. Later I would find out that as a result of my pregnancy (pregnancy is a shock, a traumatic event to the body and any stressful situation can cause the disease to flare up) the psoriasis would develop even more and awaken the psoriatic arthritis that until that point had been dormant in my body. So for nine months I was psoriasis free. After my beautiful daughter Brittney was born I didn't have much psoriasis, but it did eventually start creeping its way back into my life. Britt was born in April. In May I started having aches and pains in my back and joints. I saw a number of doctors, one who diagnosed me with fibromyalgia. As things worsened and doctors didn't have many answers for me, I had the sinking suspicion that they were missing something. I guess since my psoriasis wasn't that bad they weren't able to put 2 and 2 together. In 2003, I was finally diagnosed with Psoriatic Arthritis. Since then I have been on several different biological treatments(Enbrel, Humira, MTX,) celebrex, prednisone, a variety of meds for pain, and haven't found anything yet that controls my symptoms. Right now we are using things to help me deal with the symptoms. I take 1-2 every 4 hours of 30mg Morphine IR. I am on a daily dosage of 15mg of prednisone and 35mg of methotrexate weekly. So, I go to the doctor in the morning. Wish me well. It took me all day Sunday and off and on Sunday night, and into early morning Monday to write this because of pain, and our electric went out briefly so I had no internet connection.
Until Tomorrow!!! God Bless, Peace and Love- Tress

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