Thursday, June 23, 2011

A Day Late and A Dollar Short

The above comment is the story of my life.  Always missing opportunities, or perks and hearing about how great they were later.  This has taught me to be more observant and take those opportunities when they are presented instead of analyzing the crap out of information untill I talk my self out of whatever it was I was considering.  Or letting others talk me out of "crazy" ideas.

I was watching "Ice Loves Coco" on TV (great show  by the way, but I feel bad for how they portray her, Im sure she is much smarter and deeper than that, you can tell by looking at her)  I was struck by the story he told at a speaking he was doing at a college, about the priest and the flood.  I have heard it before, but to hear it again struck a cord that it had missed in the past.  To sum it up for those of you who have not heard it;  A priest is standing in flood water to his knees and a boat comes by to rescue him and he says no, the lord will save him.  This happens 2 more times while the water still rises and he turns it down.  The water passes his head and he drowned.  When he got to heaven, he asked god why he let him drown, and god said " I sent you three boats!!!" 

So, on to the point of this post.  The past few weeks I have noticed a huge increase in the ammount of information available about Psoriasis and related issues.  Tonight on MSN there was a link to a ton of information! ( heres the link for anyone that wants to check it out)    The information on the link was great.  It was a little basic but it was a good start.  I have to admit, I was very angry when I first read it.  I cried and threw a fit.  After a little reflection (and looks from my hubby) I realized why I had that reaction.  Im jealous.  I know it sounds petty, but I am petty sometimes.  Im not proud of it, but Im human, and I know alot of people who are petty sometimes. 

I am jealous because there were so many good articals;  how to apply make up, how to date, how to dress, tons of information.  Where was all this stuff when I was a young girl??  Why did I have to figure all this crap out on my own???  Now that Im already married, and some what content with my skin and am already an expert in dressing to hide the sores the articals come flowing out.  Well, I am glad they are here, they are doing the same thing I intended when I started this blog. To help other people that dont already know what I know. 

One thing I will say, as an observation of mine, whether im correct or not, is  I think all these articals, the ones on MSN and everywhere else are a result of the drug companies.  Have you seen the "psoriasis speaks" campaign comercials??  They are realistic for the insecure person.  For someone like me who has accepted my situation, and learned to deal with it, im a little offended because they make it seem like people who have this should be ashamed and self concious.  They are bringing more attention to the disease because they now have a product they can sell and make a profit.   These articals for the most part were common sense advice.  Dont wear dark shirts if your scalp is flaking!  Wear long sleeves if you dont want to have to explain to every Tom Dick and Harry what is all over your arms.  So obviously im still a little bitter, but I am glad for the young girls and boys that will not have to go through what I did.  I am also greatful there is medicine out there that can now stop or slow down the progression.  Now if I could just get medical insurance to pay the arm and leg the drug companies want for this stuff.  

Tuesday, June 7, 2011

In a Funk

Well,  not a whole lot has been going on here.  So I have not written in a while because I did not have much to say.  I went to my family Dr to ask for the medical marijuana recomendation and he said no, he only refers his cancer patients for medical marijuana.  He said its because he dosent have to worry about his cancer patients becoming addicted.  But.... he did increase my Oxycontin dose.   I have no Idea.  I would have much rather tried the medical marijuana and took my chances with "addiction" to pot than keep taking these "hillbilly heroin" tablets.  He did some bloodwork as well to see whats going on with the weight loss. 

I got a call to come in and discuss my bloodwork.  That is a call that will make your blood freeze.  Normally they just call and say everything is fine.  So I make the appointment, and wait biteing my nails and churning my stomach untill the appointment.  Im in the room waiting, the Dr comes in and says. Hi what can I do for you today, and I said, well, waving the card about bloodwork at him and said you tell me. 

He then looks at his notes and says "ohhhhhh,  well I was going over your bloodwork, and you have some real high levels that indicate inflamation.  I was concerned and wanted to ask if anyone has ever talked to you about arthritis"  My Jaw dropped. "Are you serious!!!!!!" I snapped.  He has been my Dr for 5 years!!!  so I proceeded to show him my disfigured swollen fingers, my scab covered skin and remind him he is the one that put me on 15mg of oxycontin 4 times a day for pain.   It took everything I had not to cry.  He obviously remembered me after that, and probally felt like and ass.  And as if he was doing me a favor, he said, I will not charge you for todays visit, I cant do that all the time, but I know you pay cash and they get expensive, so i will cut you a break today.  Really??!!! Thanks, if you were going to try to charge me, I would have exploded and hit the roof

I have an appointment later in June to see my specialist, I will talk to her about the medical marijuana recomendation.  She might be more receptive if for no other reason to get me off the oxy.  I might have to do a stint in rehab though.  If I do not take them on a fairly regular basis, I do get real bad withdrawl symptoms.  I just dont want to have a heart attack or something.

I also after about 2 years of working on it have gotten my hearing infront of an administrative law judge to try once again to get on permenant disibility.   I hope i can get it this time, I really could use the medical benefits.   If I can get the approval, I can subscribe to state retirement benefits for about $100 a month as opposed to the $700 I cannot afford lol.  Plus they have no preexisting conditions clause, so as soon as they have open enrollment, I can sign up and start my meds as soon as possible!!  I will keep everyone posted on that, It is not untill late July.  The hearing.

That is all for now, and as always, Thank you for your interest and checking in!! 

Wednesday, April 13, 2011

Medical Observations

Hello everyone,  not a whole lot has been happening lately.  I have just been tired and weak.  I have been working on my quilt top, I am so excited that I will be able to start assembling it soon.  

I have noticed, the oxycodone dosent work so well alone.  When I take it with a daily dose of mobic, It works much better.  I have been taking iron supplements as well, and I have noticed an increase in my energy level.  Instead of sleeping 20 hours a day lol im now only sleeping 16.   I am still losing weight, at a pace of about 2-3lbs a week.    I have been paying close attention to what may be the cause of it, and I think it is just my lack of appetite.  I am not humgry at all, the only time I really eat is when I am craving something, or I get a bad headache, and realize I had not eaten in a few days.  I was finally able to attach a photo of my skin, its just my legs, but you get the idea, my whole body is pretty much like this, except my face, thank god. I dont know why its upside down lol.

For those of you in Arizona or following the situation, Medical Marijuana has been approved here.  I am going to submit my application around the 22nd.  I have a Dr appointment that day, and will be asking him for a recomendation.  I do not know if he will give it for sure, but this is the same Dr that gives me 240 tablets of oxycodone a month.  I think he would prefer me try the medical marijuana and see if that works rather than keep up on the oxy's.  The process overall is very easy, as long as you have a legitamate reason for requesting it.   Because no dispensaries will be approved untill late in June, people that are approved in the next few weeks can grow their own.  I will be trying to do that.  I dont have much of a green thumb so, lol i might just be SOL untill the dispenseries open.  I will try to keep my blog updated about that as well, and if it even works. 

As always thank you for following, and If you have any questions, please feel free to ask.

Sunday, March 20, 2011

Long weekend

Hello everyone!!  Today I am very tired, I have slept most of the day.  I cleaned my bird cages on Friday, Saturday my husband had a football game.  The field is a little over an hour away from our house.  All I had to do was sit there, but sometimes, some of you may know, even that is too much.  The game went well, they did not win, but Brian got to play the whole game and he had a blast.  After the game we went to my cousins house to have a cook out with her, her husband and beautiful babies.  I drove home, even though I should not drive.  I could only go about half way before I had to have Brian drive.  My hands and feet were making it too hard.  No one has told me I shouldnt drive, but I self police that based on how I feel. I drove yesterday because he had a few beers at my cousins, and I always worry about him having a concussion after a game.  I have been awake for a few hours now, and I am ready to go back to bed right this minute, But I am trying to spend time with my husband (even if its indirectly while I do this and he watches TV)

I was at the Dr on Thrusday.  He was not too concerned with my weight loss for no reason and even went as far as to congratulate me.  I am lucky to get more than two minutes (literaly) of his time, and he rarely wants to hear about anything that is wrong. Why do I keep going???  He gives me my prescriptions no questions asked, and he is pretty cheap considering I have to pay cash.  Someday when we move to a larger city and have medical insurance, I will try to find a Dr that cares (although that is hard anywhere)  I do have a great rheumatologist I will contact if I think something is very wrong.  She will check everything she can. If the weight loss continues, I will try to call her next month.  Providing I can pay the bill to see her (she is considerably more expensive than my general practicioner)

That is all for now.  Talk to you soon!!

Wednesday, March 16, 2011

Wow, I'm suprised I remembered the password

Hello everyone!!!  And by everyone, I'm talking about me and my one follower!!  Hello and thank you for being interested.  I am sorry that I have been so horrible about not posting more often.  It has been over a year since my last post, and a lot has changed.  I will try to keep my posts shorter than the previous 2.  I hope by posting more often, that will help.  This one might be long to get all caught up.
Well, we have lost our medical insurance.  I have not had a remicade treatment since May of 2010.  I am in an indescribable amount of pain daily, but I try to remember it could be worse, and others have it worse than me.  I go to the Dr and pay cash when I can.  I pay cash for all the prescriptions I can afford.  The remicade is over $10,000 a treatment ( I guess because of the hospital fees), so needless to say I cannot do that.  I cannot do anything to stop the progression and damage of this disease, so I am managing the symptoms for the time being.  I take Oxycontin for the pain, with mobic.  I take zoloft for the depression.  I take topamax for the migraines.  That is about all I am taking at the moment, although I am surprised how cheap some medicine is without insurance.  I have to give a big thank you to Walgreens and my pharmacist, they are always looking out for me and ways to save money. 
Although I am very embarrassed by it,  I do want to post photos of my skin and how it looks.  I would also like to post photos of my finger and toe nails to show that damage as well.  I will also try to post photos of my most swollen joints. 
I have learned a lot about myself this past year.  I do what I can, when I can.  I don't stress out if I cannot get something done at the exact moment I want to.  I just try again later. I take alot of naps, I love naps. I am learning how to be slow.  LOL, I am slow, I have no choice about that, but I am learning to handle it with out all the anger and fear.  I learned I have to conserve my energy. If I know I have something important coming up, I cannot waste energy days before trying to do things like grocery shopping, or anything else that uses my energy.  I take the motorized carts at the air port now, instead of trying to just tuff it out and walk. So when I get where I am going, I have that much more energy in me to do things I want to. Little changes like this have helped me alot. 
My marriage and husband are still great.  We have had a few bumps, but nothing horrible. He tries the best he can and is still amazing.  I know all of this is wearing on him,  I try to stay positive and upbeat for him and myself.  Before I started with the motorized carts in the airport, I tried the wheelchair service, but that upset him too much.  He did not like seeing me in a wheelchair.   I have a hard time getting in and out of bed some days and he helps me alot with that.  LOL one day, I was trying to stretch and I got stuck on the floor.  I was down there for almost two hours.  I tried so hard to get up myself, but I could not grip with my hands to pull myself up and my feet and legs were so bad, I could not put weight on them to push myself up.  I had to wake him up to help me get off the floor.  Now I avoid anything that may cause me to end up in a situation where I cannot get up.  He worries about me while he is at work, but someone has to work.  I just try to stay in bed and sleep when he is not here if it is going to be a bad day for me physically.
Weight loss. Well, I am down 40lbs, It has not helped with my joints as much as I hoped, but maybe over time that will change.  I do not know how I lost the weight.  I am a little alarmed, but I go to the Dr on Thursday and will bring it up then. 
I want to start to share more about my life, my projects,  and my pets.  So hopefully there will be more photos to come!!!  I am working on a sewing project I have not touched in over a year, but I think it will be good therapy for my hands, so I want to pick it back up.  I have my cats, we have 8,  my parrots, and the dog.  They all help me stay sane in my day to day life. 

Tuesday, January 5, 2010

Well, it has been a while. Allot has been going on. I have also been very tired. I just wanted to mention because I did not in my first post, I am married. I am married to a wonderful man who does a great job taking care of the things I cannot, which is pretty much everything. He cleans, does laundry, takes care of the animals and allot more. He is very understanding and patient. None of the severe issues I have now were apparent before we decided to get married. He could have said any of these issues were deal breakers and left and I would not have held it against him. However, so far so good and I am very thankful.

I did go to the Dr, and I have started back on remicade. I had one treatment and go for another one this Friday. I have mixed feelings about being back on it. I am mostly scared it will not work anymore. And through all the changing of meds and being on and off meds I noticed something, and I notice it more with the remicade. When I am not on meds (TNF Blockers) I am in pain, allot of pain. It gets worse the longer I am not on medicine ( obviously except pain medicine, I am always on that) BUT: my head is so much more clear, and I have energy. I cannot do much because the pain limits me, but I am able to think more clearly and get things done more effectively. When I am on a TNF blocker, the pain is much less, but I am so tired I can barely get out of bed. I have the worst headaches more frequently, and I do not get much done at all, I really sleep allot. My thoughts are less complete and I have noticed difficulty in carrying on conversations much more. I lose track of my train of thought.

Through out the past 10 years I have also gained about 120lbs. Most through my own carelessness and some I blame on the steroids and birth control. (because of the methotrexate I have to be on birth control, that medicine causes spontaneous abortion or severe birth defects) And I can only assume that the extra weight is not helping me feel better at all. I have been trying to lose weight. This opens a whole new can of worms.

I have difficulty exercising due to pain, moving is supposed to help loosen your joints and make you feel better, exercise for me makes it much worse. I feel it more in my muscles and tendons. So i did not really attempt to lose weight because how could I? I could not exercise. That was how I stayed fit before, I ate what i wanted, and exercised my little heart out. Well I was in my latest favorite place, the local antique store. ( i wish i could buy everything in there) and I was talking to the owner about how I could not exercise because of the pain, and he told me about how he also could not exercise because of various joint replacements and pain, and that he had lost 70lbs just watching what he ate. Well, if he could do it, I think I can do it. I had tried it about 2 weeks before Christmas. I did an "uneducated my version" of Atkins and lost 9 lbs, then we went back to New York for Christmas and I have gained 7 lbs back. But now that we are back in Arizona, I will start back on my weight reduction journey. It was nice to see all our family and enjoy such great food and company. I do not think it will be easy, but it is something that I have to do, IF it will make me feel even just 20% better, that would be a huge improvement.

Well thank you for checking in, and I will try to post more frequently.. Its my new year resolution. (not really, I hate those) I will keep you all updated on the arthritis situation and if i make any headway in the weight loss area also.

Wednesday, December 9, 2009


Hi, My name is Shannon. I have started this Blog to keep a public journal about my thoughts and experiences regarding my health. I welcome comments, suggestions and information, but please be polite. I am doing this to help my mental health, not destroy it. I am really new at this so i welcome any corrections to my technical blog issues as well. I already know i cannot spell and will use spell check when I remember lol.

I have psoriatic arthritis, among other things. I was diagnosed when I was 19. I am now 30. At first, I was like "OK, arthritis, no big deal. I will take Tylenol." Well, to everyone else out there living with arthritis, I'm sorry. I'm sorry I minimized the severity of this disease like so many people do.

At first it was just my toes that hurt. They felt like someone took a sledge hammer to them. I did not realize it was the disease, I thought it was because I worked on my feet for a living. I thought it was because I did not have shoes with enough support. I was put on Celebrex and Methotrexate. It worked for a while. I also found a job where I did not spend so much time on my feet.

The Celebrex and Methotrexate started to not be as effective as it once was and I was given a numerous amounts of other pills to no avail. Then I started with the TNF Blocker medicines.

The first was remicade, it was wonderful for me. All my pain went away, and my skin cleared up almost overnight. (i had severe psoriatic skin lesions all over my body) I was on it for 5 years. I had some issues with my new insurance covering it, and it had started to not have as great of results anymore. My Dr said I was experiencing "dose creep". We switched to humeria. I did not have much luck with that one. It did not work that great for me, and I was always sick, and having to stop it so I would not get a bad infection.

After almost a year of humeria, we changed to Enbrel. I have not had much luck with that one either. I get real sick after each injection, although I do notice a decrease in pain I cannot get out of bed because of the excruciating headaches and nausea.

I actually go back to the rhumatologist today to see what our next plan is going to be. I would like to try and go back on the remicade maybe at a higher dose. I have new insurance now and It should be covered now. The Arthritis is no longer in just my toes, the past few years I have found it is in my ankles, my wrists, fingers, knees and back.

I will write soon as to what happens at the Dr tomorrow. It is a long drive for me, and I am real tired after those trips they take allot out of me, so I will write as soon as I can.

Thank you for your interest. Any questions one may have that will not give my location to a serial killer, I will do my best to answer.