I know I've been absent for about a week. I decided to take a road trip to Phoenix. I am SO glad I did. Firstly I am getting to visit with my family which I miss dearly living 1000 miles away from them. Secondly for a joint vacation. No I don't mean a weed for my friends who like to turn everything into double innuendo. I mean my joint pain. Yes I still have pain, but it's literally like turning back the clock 5 years. I was even tempted to find a place to go dancing just because I think I actually could get away with it. It never ceases to amaze me the difference the desert climate makes for me. Even with it being "monsoon" season I feel GREAT in comparison to my normal comfort level.
I really don't think Simponi is doing much for me yet, but it could have something to do with it too. I will have to wait till I venture back east to find out for sure. The fact that the pain gradually decreases as I get closer and closer to El Paso on my trip leads me to believe it's not Simponi, but climatic change that is the improvement. My skin is worse if anything so it's definitely not doing anything for my psoriasis. I am not having any really bad side effects still either so I will probably give it till December to show some improvement before totally discounting it.
Simponi really isn't the reason I'm blogging today so enough of that. I am having a great vacation spending time with my family and otherwise doing pretty much nothing. I feel rested for the first time in months. Again I say, it's AMAZING! My mid term goal in life is to move here, hopefully before my arthritis advances to the point that the climate won't make a difference. The reduction in swelling makes a big difference in the degrading of the joints so getting here for my health is looking like it may become a shorter term goal than I originally planned. I know my family would be thrilled to have me closer as I am the last one not to migrate to the desert in my immediate family (my kids not included). Even when I was younger and living at home I don't remember us being as close as we are today as a family. I miss them being physically in my life on a regular basis.
So here's to the desert and all it's charms. Even with 100+ temps it's where I want to be very soon. The only thing I could do with out is the ginormous spider that came out to say hi. So to close I'll leave you with him. I'm pretty sure the only thing that will kill him is fire.. Lots and lots of fire....
Good ole Salt and Pepa. I heard them on my radio this afternoon on the way home from work, and decided maybe it was time to approach the unspeakable subject. I know my mom and sister read this, and my dad probably lurks occasionally. I have been hesitant to discuss this for that reason, but it's a part of life for most of us so I think I'll go ahead and discuss it with the warning to them and anyone who is sensitive to the topic of this conversation that it will be about sexuality. I won't be going into the intimate details of my sex life so much as to how chronic illness can impact a person's intimate life and their psyche in relation to that part of their life. You have been warned this blog will be about SEX.
To start with I will admit I like, no, love sex. Both the physical and emotional intimacies are something I have always enjoyed. I wanted to make that clear because this is not going to be someone talking about the challenges of sex with a chronic illness that doesn't even like it much to begin with. The downhill slope is something that you can see coming, and regrettably wish you could do something to change, but can't. Just like anything in life that you love to do, the anger, sadness, self loathing and pity party comes when that thing becomes more and more difficult to do. Unlike dancing or walking this is something that generally affects your partner(s) and their intimate connection to you as well.
I guess I'll start with the challenges. There is of course the obvious, pain. When you are in pain it can be very hard to get in the mood. Many times once you get the ball rolling you can get past most of the pain, but getting that ball even picked up can be a daunting task. Not only are you in pain, but your partner is often worried about your level of pain and making it worse. It often leads to a stalling out of those activities because you can't get past the pain to start and your partner is terrified of doing anything that will make you worse.
Then of course there is energy. I know in today's world of work, kids, family schedules, and just living in general that is an issue for everyone. When you have a chronic illness that is even more compounded. Not only that, but on days when you do have energy you want to cram everything you can into the day and often wear yourself out to the point that what you sacrifice is the intimate time with your partner. Many people with busy schedules have resorted to scheduling sex times, but since you never know when your body will decide to suddenly turn into cankles and the claw it's almost impossible to schedule it. In fact when you are stressed out about making that schedule and pleasing your partner it can actually induce the arthritic flare. It feels like an endless losing cycle sometimes.
Next on the list of challenges is self esteem. Another one that many people without chronic illness struggle with I know. I can speak for myself here though. It's really hard to feel sexy when I look in the mirror and see the 30 pounds I've held onto the last 4 years and can't diet away because my exercise options are so limited. To see all the scales, that my butt, legs, trunk, under my breasts, around my groin all have psoriasis spots. Even my feet are unsexy with the swelling and scales. Getting in the mode when you feel ugly in comparison to your old unsick self, and knowing that hope for something better is not likely is hard to overcome a lot of the time.
The last challenge I'll address tonight is the fear of letting your partner down ALL the time, and of losing your partner because of it. My boyfriend tells me all the time that I am beautiful and sexy. He tells me he desires me. He also tells me he is patient and will be there when those days come when I am able to have intimate time with him. I still feel like I am cheating him because I can't give him the frequency or level of intimacy we once shared. I am lucky that to he is the most understanding and kind man I have ever met, but that doesn't stop the fear of losing him because he will eventually want something more than I can give.
I don't know that this blog will help many people except for them to understand they are not alone. I don't know the answers to how to build your self image when you know there isn't much you can do to actually improve your appearance or stamina. I don't know how to quell the fears of losing someone you love because they aren't getting what they need from you. All I do know is that these things are things I deal with every day, and I know others are going through it too.
As always all we can do is take things one moment at a time. Do what we can when we can and hope for the best.
I am now 3 days post shot and some things are up, some things are down, and some things are just plain all over the place. In the pain department I'd say there is improvement. I am in pain everywhere, BUT it's what I like to call functional pain. I did need a vicodin this evening. This being said, we had storms all day today, and a pretty big one this evening. My pain was nothing compared to what it was when we had similar storms last week. Before Simponi these storms would have taken me out especially considering we've had them for 2 days now. Patient reviews I read before starting Simponi said that most people felt results between 2 days and a week post the first shot. So a positive trend on the pain front.
My skin is a little bit all over the place. Some of my worst spots for psoriasis are appearing to be improving even if I do itch EVERYWHERE. Then there are a few places that I have never had psoriasis that have new patches. My most scaly spots are shedding like a lizard molting and new skin is healthy underneath. Even my butt which has red blotchy psoriasis has a whole section that is now clear. I have a rather large butt so that is quite significant. Then there is my face, outer ears, eyelids, and inside my nose, which have never had psoriasis, have developed small patches of scales. My scalp which is a long time issue is still bad, and feels like it's getting worse. I'm not sure whether to call all this improvement, or getting worse. It's very up and down depending on how you look at it.
As for side effects, the nausea is better, but still lingering. Dizzy spells come and go, but are getting better and less pronounced. The arthritic flare is still around, but as I said my pain level is less than I would normally expect when having the level of storms we have had this weekend. My feet and hands don't seem to be swelling as much as before either, but I am having random seizing of my toes and fingers.
I know this blog is pretty sterile today. It's really more for my own benefit to track how I am doing symptomatically with this new drug. Tomorrow I will go back to being my comical self. Hopefully a comical self in even less pain than today.
So in the last 24 hours I have gotten the Simponi approved and received my first dose from the UPS guy. I will be taking it tomorrow so fingers crossed! I also got my FMLA approved. Now I will probably lose about 20% of my income because I don't get paid for FMLA days, but I also won't get fired for my absences. 80% of something will always be better than 0% of nothing, right? Also if I'm making 20% less my kids might actually qualify for some federal student aid. LET'S GO PELL GRANT!
This week has been a pretty moderate pain week thankfully. I haven't needed a vicodin since Monday. Now this isn't to say that I'm not in pain. It just means my pain levels are manageable without narcotics for now. Something I have found people who don't have chronic pain can't wrap their minds around is how people with chronic pain perceive pain. I personally haven't had a day without pain in so long that I can't remember what it was like to be pain free. People in my life will frequently ask me if I'm in pain. If I answer honestly my answer would always be yes. What doesn't factor into the black and white answer is the fact that when you have chronic pain you learn to have a level of "acceptable" pain. It's still pain, but you don't really register it anymore unless you focus on it. It's like if you work in a building that has a piece of machinery with a constant hum. Do you hear it? Yes, if you think about it and acknowledge it you hear it, but on a day to day basis you learn to kind of ignore it and it just becomes that white noise you don't really hear anymore. This is part of the reason that having mental coping mechanisms can be so important. It can be a quick flush down the toilet of life if you let the pain be a focus for too much of the time. It can become all consuming. It can drive you to being mentally ill on top of physically ill. It's a delicate dance to manage your pain, your mental health, be mindful of your medications and their side effects and living a somewhat normal, all be it adjusted, life.
As I've said before reading is one of my coping activities. I also practice that deep breathing "in through the nose, out through the mouth" used in both Lamaze and yoga. Funny both those things use that breathing practice as my experiences with both have had extreme and painful results afterward. Anyway, know your comfort positions. Mine change over time and depend on the particular joints having a bad day. When it was just my hips I would sit kind of Indian style and then lay back. This stretched out my hip flexors and forced my back into a more comfortable arch. I could sit like that and day dream for a good hour at a time. Yes I looked a bit crazy dropping down on my coat on the floor of the airport, but it sure felt a lot better, and those long boring layovers were much more tolerable. Laugh. This one is a universal mood enhancer. I'm blessed with the ability to find humor in the not humorous. Much to the dismay of many people around me who find it impolite, but none the less there has to be a reason for inappropriate humor. Maybe my arthritis is the reason. No matter what's going on I can usually find something humorous and inappropriate to say or think.
So to end today's blog I'm asking everyone to keep their fingers crossed that not only does Simponi help my arthritis and my psoriasis, but that it doesn't bring on the side effects from the depths of hell. I'll take a few minor ones, but I'd rather not gargle glass, be bald or get pneumonia.
I am one of those people who are sensitive to atmospheric change. This means that when storms are building my pain levels increase the more they build. Usually I dread spring because in DFW we are bombarded with storms. Somehow this year it seems like storm season started early and it doesn't seem to be ending. For 2-3 days now we've had sporadic storms. They are all around us. This means the arthritis is constantly flared up. Being it is now a few days into this I am starting to get worn down. I try to stay positive about things. Tell myself it will get better soon. Practice my deep cleansing breathing techniques. Count down the minutes at work till I can get home to take some pain meds. This also leads to my inner worry wart rearing it's ugly head.
I am realistic that I have a limited amount of time that I can continue working, at least in my field. I had hoped I could make it about 5 more years to get my kids through college and pay off my car. Days like today I can't imagine making it through the year let alone through 5. I also don't know what I want to do when I grow up. I've had a good run as a Metrologist. I'm good at what I do. I am just very aware that every year I am more and more limited of what I can do. The stiffness in my hands impedes my ability to do many things already, lifting things is difficult and aggravates my joints, and just getting out of bed to go to work is challenging most days and just not going to happen more and more frequently.
I am fortunate that I am a service connected disabled vet. No not fortunate in that I got hurt in the Army, but that I have options. I have the option of using vocational rehab through the VA, but what is it I want to do? What can I do that I won't hate, that I can make a living at, and that I will continue being able to do as my condition worsens. So many questions to swirl through my pain overloaded brain.
After it's all said and done and I waste hours and days worrying I remind myself that worrying is just that. A waste of time. I can't control the progression of my arthritis, I can't control the future. What I can do is be as productive and positive today as I can be. Remind myself of my blessings. My loving and supportive family, a boyfriend who treats me like a princess even when I'm the evil witch, a good job in this horrendous economy, and a sharp mind even on days it likes to throw all the worst case scenarios at me. I am blessed today. What tomorrow brings will continue to be a mystery and an adventure.
