But you don't LOOK sick ...

“Squeezing droplets of life between the crevasses of pain, illness & disabilities. But I don’t look sick ..."

PsA & AS: The Challenges of Sero-Negative Auto Immune Diseases

With a constellation of symptoms that rivals several chronic illnesses rolled into one, and blood work that frequently refuses to fit neatly into "the box," the auto immune conditions umbrellaed under "The Spondyloarthropathies," can be tricky to diagnose and equally as challenging to live with. There are many troublesome and less than lovely symptoms which accompany both conditions, but the pain associated with these auto immune diseases may be the most difficult to deal with on an everyday basis. And, just like the majority of equally mysterious auto immune diseases, it is not uncommon to find one's body under attack by one or more additional illnesses at the same time PsA and AS is invading the body. I have certainly found this to be true for myself, and it most definitely makes functioning and living with these conditions an enormous struggle. While I have had both illnesses reeking havoc in my body for at least 5 years, I was not officially diagnosed until the Spring of 2011. I am a pretty experienced patient with several other chronic conditions, but I have a lot to learn in relation to these diseases. My hope for this blog is to share my personal challenges and experiences with others who deal with Psoriatic Arthritis and Ankylosing Spondylitis, and hopefully gain new knowledge and support along the way.
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Friday, January 6, 2012

Chronic Pain Anyone?

Chronic Pain Anyone?

Chronic pain. The phrase, or rather, state of being, makes many of us cringe with great discomfort and resistance from the get go ... but unfortunately, so many of us deal with it every single day of our lives. It makes daily functioning - everyday activities - extremely challenging, and affects many, if not all areas of our lives. Those who battle chronic pain know just how much it can affect energy levels, attitudes, mental and emotional states, along with our general interactions and behaviors in our world. It is always on our minds, sometimes so much so that we cannot sleep, participate in activities, even eat. Chronic pain literally drains us; depleting our energy levels so much so that it is a struggle to get out of bed some days. And, once we open our eyes and make that first movement to get out of bed, we are faced with the challenge of "getting going," so to speak. We quickly and easily become exhausted from dealing with the pain which emanates throughout our bodies, and for some (myself included), the pain is so great that it feels as though one's body has been hit by a mack truck during those hours of sleep. Depending upon the cause and source of the pain - which may be experienced in a variety of ways - one thing seems to remain consistent: It is a daily struggle which is always present, creeping into every aspect of our lives.   

Pain is our body's way of telling us that something is not right within one of our many body systems. It is meant to alert us to a problem, and in turn, we are suppose to either "fix it," or stop the action/behavior which is causing the pain. But, when we are faced with a permanent health problem/condition/illness that results in continuous pain (and therefore, the problem is not fully corrected), we have to seek out different ways of "solving" our pain problem. So many of the "solutions" for chronic pain, provided by the medical community, are more or less "band-aide" fixes. Of course, there is the popular "medication fix," which does not truly address the problem, although for those that have too much pain to deal with life, it is often a necessary evil. On the positive side, medication may assist in decreasing pain levels, resulting in the body conserving and directing more energy towards healing the core problem(s). Surgeries, and other medical procedures, are common place for western medicine providers as a means to solving pain related conditions. But, I must say, that in my experience many of these "solutions" only lead to more problems, rather than fixing the underlying issues. And, I fear that there are a few too many doctors out there whom are a bit too excited to jump to the surgery route, but, that is just my humble opinion, not a fact. Of course there are situations that require surgical interventions in order to save a person's life, and I understand this as well, as I faced a similar dilemma. In my personal situation, while my operations and procedures promised not only to save my life (which they did), and reduce the pain (to a good degree for several years), the outcome was far from what was suggested or anticipated, and to be frank, my pain remains a life long struggle. When an individual does require surgery, more often than not there remains a mix of ongoing and unpredictable problems as both a direct and indirect result. It's typical, at least in my experience, that many doctors and healthcare providers often bill a given procedure or surgery as a complete fix; a fix that promises a solution to the given condition, end of story. All of us dealing with chronic pain - whether it arose from a spine condition, injury, illness, or any other countless health condition - know the truth. And the truth being: That there is no true "fix." No matter how grand, no matter how praised the procedure, or skilled a physician, there is no simple, quick or perfect answer to the pain problem. So many people want to believe in that fairy tale. And it is understandable, as we hate to see our loved one's in pain and suffering firsthand is not a joy either, especially if it is a long term and daily experience. It seems unending, and honestly, much of the time, it is. 

Medical science has come a long way in a short period of time. That much is true. But, for all of you fellow chronic pain sufferers - those whom battle chronic ailments and diseases like cancer, auto immune diseases, spinal conditions, transplants, severe infections, and so much more - know that no matter how spectacular the presented solution appears, there is no band-aide which truly sticks. This is why I have believe it is so important for those who suffer with chronic pain to share our stories and provide each other support, empathy and compassion. While there are many causes for our pain, we all deal with similar struggles, face the same challenges, battle the same attitudes, navigative the same painfully broken medical system, and fight for a sense of normalcy with everyday that passes. I hope that anyone and everyone who deals with chronic pain may feel that they can share their stories, their tears, their anger, and their accumulated knowledge & experience on this page. I hope that we can provide each other some support, resources, and the "do's and don't's," all in the name of decreasing the pain.  

Chronic pain sufferers are the only ones who can truly empathize and hear other chronic pain sufferers. The same sort of rule is witnessed with both chronic illness and other serious long term health conditions. It is a struggle to get others in your life to really "get it." I find that while they try to understand, try to sympathize and be compassionate, it is nearly impossible for them to understand the full magnitude of chronic pain when they are not in it everyday, every minute, like we are.  I know that many of us try to remain quiet about our pain, not to bother our significant others or family and friends. And that as a general rule, we try to avoid sounding like we are "complaining." And we are not complainers. We are usually survivors ... courageous survivors at that, and all of whom endure far more than anyone should ever have to deal with in a lifetime. It becomes beyond frustrating to get others to truly understand that we do not enjoy being in pain, nor do we enjoy having the same answer to the question, "how are you feeling?" This struggle often interferes with, and strains relationships and friendships. It can make us doubt ourselves, our bodies, our minds, and can result in an internal, and seemingly hopeless battle of anger, frustration, and sadness. 

I believe that this issue is similar to the struggle so many of us face with doctors, and convincing them how we feel in our own bodies. We know ourselves better than anyone else. Yes, even better than the "god like," "know it all" doctors, whom often try to tell us we are crazy or depressed when they can't find an answer to our pain and constellation of symptoms. It is an easy train to jump on, not to mention a frequently travelled train ... It allows the doctor to appear competent when they doubt themselves (which they rarely admit to), and with their authority and status, we begin to doubt ourselves, believing that our pain is not real, or that we are crazy, selfish, and/or attention seekers. It happens so often that we begin to ignore our best advocate; our intuition. When we are ill, dealing with so much pain, facing daily fatigue, and literally struggling to get through the day, we have little energy left to battle doctors, question their authority and push for help. I have experienced this first hand more than once, and it nearly resulted in my death, and ultimately changed my life forever. I would like to note that I do not dislike all doctors, and do promote visiting a provider(s) whenever your health requires. But, I want to emphasize how important it is to listen to your own voice, trust your gut, and not buy into the idea that the doctors know all and should not be questioned. From both my own personal experience, and from observing and listening to other's, I have seen a pattern that seems to occur far too often, one which I find frightening.  

I will post blogs to this page that describe various personal experiences in the "field of pain"... situations, stories, experiences, and interactions, that others that would likely not fully or truly understand, unless they too have been in the throws of chronic pain. I will also add my findings when it comes to what has worked for my pain, and what hasn't cut it. Two treatments/practices already mentioned in the blog include Soma Body Massage Work and Reiki Energy Work. You may read more about the practices themselves, as well as how they have helped relieve my pain. There are additional website links provided which are related to sites which further detail the practices and where you may find providers in your area. If you have any questions about said practices, please don't hesitate to contact me! Also, please add your own suggestions, as we can never have too many ideas and suggestions for the relief of pain!!! My desire for this blog subject is simple: I hope that it may allow a dialogue to open between all of those whom experience chronic pain, so that we can share, support one another, listen and truly hear each others pain and struggles (because sometimes that's all we need, no judgement, no comments, or even suggestions, just someone that really knows how you feel and can therefore provide validation in your experiences). There are obviously a lot of different ailments, and with all these various conditions comes a variety of surgical procedures/options ... Some are more successful than others, some are "newer" and/or "experimental," and many can only be found at certain medical hospitals, universities, communities. If you have information regarding any procedure, providers, hospitals, etc., please provide any details that you may deem important and ultimately helpful to someone dealing with the same or similar situations. From my experience, given the level of patient privacy rules these days, it is often hard to get all the information you need, the nitty gritty of the details, what to expect, how a doctor performs (even personality), and all can help a fellow chronic pain patient find a good fit for their health care choices ... hopefully, making their future a bit better through knowledge that may allow them to avoid certain things, and ask certain questions.

4 comments:

  1. Thank you Brenna for sharing that story and your pictures. It helps me and others to see what Immune Diseases look like on the outside. It also helps others that are dealing with this to not feel alone. I am so proud of you for posting the pictures and not being ashamed or embarrassed by them . I just wanted to let you know when I viewed them I didn't feel pity and I didn't scrunch up my nose and say UUGGHHH...I thought to myself...I wish I could reach across the states to you and put your face in my hands and kiss you right smack on your forehead and tell you how beautiful you are, inside and out. What a strong and inspiring person you are. -Your KY Friend -Dena

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    1. Dena, Thank you for letting me know that you left this comment ... I didn't get an alert that it was here, so I appreciate the heads-up. You are very sweet and thoughtful, and I really appreciate your comments :). It took me a long time before I was "okay" with posting these kind of pictures for the "world" to see - several years in fact - but I figured that with illnesses which are very much "invisible diseases" by nature, that showing the few symptoms one can view on the outside, would be helpful for people to better understand, .. not to mention, those with the conditions, to better relate to. I am also a member of an independent Psoriatic Arthritis Support Website and have many of my pictures posted there for others with the illness to view. I have received several replies regarding how said individuals had not been able to find another sufferer with the same presentations until they saw my pictures. It's nice to hear that by sharing the photos I am able to allow others to feel a little less alone in their experience and struggle with the disease. It has been a battle for me in many respects to just deal with what the illness does to me on the outside, as I no longer see the same person in the mirror, and much of the time feel like an ugly grotesque monster. I never fully appreciated the beauty I once had until I lost it to this disease 5 years ago. Same goes for my paralleled battle with weight gain. Frustrating to say the least. And, with the inflammation and skin issues, I never know when they'll appear, so one day I can be fine and clear, and the next morning I am a huge mess! No, or very little warning.

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  2. I have just stumbled across your blog as I continue to research on behalf of my husband who is 48 years old and was diagnosed with AS 5 years ago. He is finally forced to file for disability and I've been his advocate, researcher, organizer, etc. He has been through the gamut of treatments, tests and meds and has a host of other conditions that follow in AS's nasty path. But, your pictures of your Psoriatic Arthritis have set a light bulb off in my head! For years my husband has had the sausage fingers, the weird rashes and blotches on his face and body and no doctor could diagnose it. Everyone was consumed with treating the AS and all the other mess of things he's got. But, he was diagnosed back in the 1990's with psoriasis. It crops up every now and then and he itches it, deals with it and never really delves into it with his doctor's because the AS and the chronic pain are all consuming. But, I believe after looking at your pics and reading your story that he has Psoriatic Arthritis! I can't wait to share this with him when he wakes up. He overdid it helping a friend yesterday and is going to pay for it today, I fear for him honestly. But, thank you for your blog. It's a wealth of comfort and information for people suffering from AS and PA and a comfort to the people that love them.

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    1. Hi Jeanette,
      First of all, thank you for your message. I appreciate the feedback and it's truly wonderful to know that what I share on my blogs offers some real assistance to others - it means the world to me, as I too, am swimming in the deep end of pain & struggle associated with these chronic illnesses. I can certainly relate to your husbands ongoing battles with his body. You message reminds me that I need to get back to blogging on all of my blogs, as it's become my "job" since I became ill. I've been focusing more so on my support groups recently, but I forget that many of those who find the support groups do so through my blogs ... and therefore, I actually do have an audience! Yay! :)
      I am very pleased to hear that my pictures may offer some new insights, guidance and answers, into your husband's chronic health conditions. While I don't know anything more than you've told me above, it certainly sounds as though he might have PsA considering his AS diagnosis and the fact he was diagnosed with Psoriasis years back. Some of the pain associated with both conditions can overlap each other and be a challenge to sort through. And, just like with AS, PsA isn't the easiest condition to diagnosis since it's typically sero-negative in nature. But, I would certainly think that his MRI's would show a bit more than just the AS damage if PsA is in play ... so you would definitely want to speak with the Rheumy when you're able. May I ask what other symptoms he has which perhaps do not "fit" well with the AS diagnosis? The symptom presentation is most certainly a factor and indicator for the condition and may very well offer that missing piece. I noticed that you mention the sausage digits and the skin issues ... does he have any eye symptoms/involvement or unexplained inflammation in other parts of his body, including that of the chest cavity? (Does he ever feel as though he can't breathe very well, have tightening in the chest, etc., yet it's not a panic attack nor a heart attack?). Also, has he experienced any digestive related problems or bladder issues? Lastly, does he ever witness lymph gland inflammation and low grade fevers and/or "hot spots" on various locations on his body?
      I must say that you are such a wonderful partner and person for being such a dedicated health advocate for your husband. We all need help when we deal with these kinds of debilitating chronic health conditions, and while it's important to try to advocate for ourselves, that's not always a possibility ... especially when we are beyond exhausted/fatigued, can barely function and get through the day, not to mention dealing with the severe chronic pain and the other wonderful symptoms which accompany these illnesses! Thank you for being there for your hubby - for offer so much support, understanding, compassion and validation. I wish everyone with a chronic illness had someone like yourself in their corner!

      Thank you so much for the compliments on the blog as well. I really hope that what I've shared may offer you guys some new hope & light. If you or your husband have any questions, please don't hesitate to contact me anytime. I hope to hear back from you, as I'd really love to know your husband's thoughts as well, in addition to the outcome of any future doc appointments regarding this new possibility! You are welcome to comment on the page, just as you've done ... as well as contacting me through my email: healthandillness@gmail.com. Now, quick question before I let you go: Perhaps I've confused you with somebody else, but are you and your husband a part of any Facebook Support Groups for AS?

      Blessings of health & energy to both of you, Brenna (Cat)

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My interest for all things related to health & illness arises from my own struggles with chronic health conditions. I have found it most therapeutic & empowering to write about my many experiences within this realm. Through education, my own research, and my ongoing personal challenges, I am teaching myself how to become my own best advocate. To learn more about me, please see the page entitled "About Cat" located at the top of the page. If you have any questions or comments, you are welcome to contact me through the "about" section listed above, or email me at healthandillness@gmail.com. Please note that this address is also linked through my profiles. Blessings of health, energy and peace.

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