Stuck in Hibernation Because Stress and Lupus Controllled My Treatment Negatively

Starting Over Again On Prednisone…

Stress Overuled It’s Intended Course of Action Don’t Let This Happen To You

It’s been quite sometime since I posted anything regarding my treatment my new-found disease Lupus and it is with good reason that I haven’t. Last I wrote I had sat down on the side of my road and watched as others who have Lupus carried down that road with their heads held high and their hearts filled with the positivity I had vowed to take this disease on with. That hasn’t changed but a lot has changed as I began my treatment of a 40mg Prednisone taper that well I think its been a good month and a half of and were I where I should be Monday I would of dropped to 5mgs and been almost done with the taper. It is this that I want to write about and share with you but know I’m sharing with you something that is not the norm for most folks but it’s a lesson learned and one I feel needs sharing for those of you who are on prednisone to treat your flare ups or to start you new journey to a better way of living flare free as possible.

When I started at 40mgs it was a wild ride through the psyche – you’re on the verge of your own skin ready to jump at any point because everything you feel, have felt or didn’t realize was as serious to your body becomes very real. It rises to the surface like oil would rise on water and in doing so you tend to be more outspoken, more on edge and more adamant about the things you want or don’t want to deal with. We all have things in our lives that stress us – to think that you can remove all your stress is like believing you will hit the lotto tomorrow and your Lupus will magically go away as quickly as you were told you have it. One thing that is the most important thing to remember about Lupus is that you have three culprits that are most detrimental to your life and longevity of your life. Those three things are Stress, Illness and Sun – your little outlaws’ catalyst that keeps it thriving and driving its way through your body at warp speeds and once its on a rampage that’s when you will be given a treatment of prednisone. Dependent upon where you are in your disease, how long you’ve had it, how long you’ve known you had it and your relationship with your doctor are the key factors in what will be decided upon as far as how many milligrams of this med you will start at. I had never been treated for my Lupus so this was the first step in my doctor and myself to discover how to start our course of action – first we do the prednisone which was a high dose due to fact there was a lot going on inside this body of mine and it needed a strong kick in the ass. After I went through this which as I would be going through it the medicine would be eliminating the inflammation and taming the flares or putting them to sleep – after two weeks I would begin the Plaquenil 100mgs 2 times a day – this is a drug that if you can take is a wonder drug for Lupus patients as my previous entries has spoke of.  I unfortunately couldn’t tolerate the drug – I don’t handle drugs that have sulfur or sulfate in them and I was horribly nauseated for the entirety of time I was on it. We tried to cut the amount of the dose in half however due to my body not liking this drug the nausea wouldn’t go away; however, within 24 hours of stopping the medicine the nausea left as if it had never been there. Now trust me when I tell you I wanted very badly for this drug to work but this was not your normal nausea and this is a drug I would of been on for the rest of my life. This is one of the best drugs in regards to treating Lupus due to the minimal serious side effects and the fact that its not an auto-immune suppressant drug type. When I speak of serious side effects what I refer to is how the body processes this drug, ie…it doesn’t threaten your organs as much as the other drugs do – the worst case scenario is that it can cause damage to your vision with long term use that is irreversible.  Losing your eye or losing your kidneys/liver – you see my meaning?

Now on top of all of this not working the prednisone bringing all of my feelings to the surface and the reality of my three worse enemies I decided in the early stages of finding out that there was one thing in my life that truly, truly stressed me out both emotionally and physically and knew I had to change this. I had tried to change it prior to taking prednisone so it wasn’t something new but when I was on that high of mgs it stuck there in my craw and in essence by being so prevalent it was causing its own stress and where I was suppose to be healing my body my prednisone was too busy fighting flare ups because I chose to end this stressful situation once and for all. In doing so it kindly backfired what I thought would fix it didn’t fix it instead things only got worse. The only thing I will say in regards to what this stressful situation was is that it dealt with another person and I only tell you this much because in order for you to understand why I’m now back at square one when I should be so much further ahead of the game and on my way to wellness, I have to share with you how this came to be.

If there is any advice I can give you as you are on a prednisone treatment it’s to truly try to ensure that while you are trying to resolve your flares that you don’t allow others to interfere with that treatment. Not many of you will have this issue and I honestly never thought I would because I had hoped by my approach to end this problem with this other person things would of been fixed and onward I would go without that one big thing looming in my heart and head any longer. That wasn’t the outcome so I can’t tell if you should wait until you finish your treatments and then deal with the issues you might be having once you get the flares under control or you should go ahead and try to take care of it so it doesn’t continue to be a problem – as stated it backfired on me and with that worse stress than I had before was only added on top of that. Keep in mind this is not an every day issue – its not life as we know it or deal with it on a regular basis it was a major possible life changing problem that I just couldn’t live with anymore and because of the prednisone where my voice was but a whisper it became a lion’s roar. By that let me explain to you that the drug doesn’t make you crazy – it doesn’t make you flip out or wig out on people for no reason it only if anything basically removes any fears you have of speaking up for yourself and so I did.

Upon doing this all hell broke lose or so it seemed as it still is an issue to this day but because of that all that time I spent trying to take my prednisone and become flare free as possible so my doctor could evaluate the situation my treatment spent most of its time fighting flares from the stress I was going through so it couldn’t just take away the inflammation and give us a good idea of how my body is living with Lupus. Now when I’m suppose to be going down to five mgs a day I will be on a 4 week treatment of 15mgs a day to try to get this under control and then on April 15 I will go back and we will see where we are and see if or what drug of choice will be used to treat the Lupus. Prednisone doesn’t treat Lupus it only treats the symptoms of Lupus – some people can go through life without a Lupus drug and only need the prednisone when they occasionally flare up if that is how their body is handling their disease while others will need a lifetime drug which is most likely what I will need because I also have lesions on my brain that could be CNS Lupus or the early stages of Multiple Sclerosis starting to show itself. With this in mind my neurologist suggested a treatment using Methotrexate because it would treat both the Lupus and the possible MS. At this early in the game for me with the MS side of the issues that are showing themselves or ie neurological issues I am having they could do a spinal tap to rule out the MS however it may not be accurate because it is so early so with that in mind using this drug despite how dangerous it can be it would treat both symptoms and diseases at the same time.

It’s been a lot to take in over the course of the last month and I still need to go see an eye doctor to find out why I’m getting blurred vision and sometimes having issues seeing at all for brief periods of time they are more like spells than a regular problem. Anyhow, this is what has been going on with me since I started the prednisone and it is during this time I have received the most support and care about my well being from my family and I can’t tell you how much it has made a difference. What I haven’t been able to do is stop the major issue that was stressing me stop. Because it deals with another person who knows all that I have told you, you would believe that for the sake of a person’s well being that this would cease and disist as being a problem at all but instead of it doing that it only has made matters worse and so it is I have chose now to take a path I didn’t think I would have to take ie we could work this out and things would be fine – well because they are not fine and because now I have to start over so to speak and try to get the flares under control a decision that would of been made has to change.

This is my life – this is my day to day living in pain and having other sorts of things happening to me that I can’t control and its not good by any means YET. I say yet because I have made a decision after my first choice didn’t work to cut the ties that bind and ensure that this person cannot continue to hinder the process of me getting the health care I need and me feeling better as can happen if I’m not so stressed out that I’m maxing out my bodies ability to handle it and leaving the only thing the prednisone can do is fight the flares instead of helping me and my doctor determine the best course of treatment for me. If you have someone in your life like this if you have a ways and means to remove that person I would highly suggest it because if you don’t you’re only playing Russian Roulette with your body’s wellness and your future treatment. Trust me when I say this has been the most stressed  I have been in I can remember when and as much as I have tried to convey to this person how badly this is affecting me they haven’t heard or don’t care to hear a word I say and continue to create this factor of stress that my body just can’t overcome. It wasn’t an easy decision for me to make and not one I would of made had things worked out as they should have but you can’t imagine what it’s like to go through “sone land” for such a long spell only to find out you’re going right back into it for at least 7 or 8 more weeks by time they taper me off it maybe more depending on what my doctor decides to do medicine wise as we meet again on April 15.  Lupus hurts – walking away from a person who is making your Lupus outlaw happy as a bug in a rug but leaving you suffering the consequences hurts but if you weigh the options you can understand why I have chose to hurt from walking away rather than hurting a lifetime because we can’t get the treatment going – get things under control and me getting back on my road of positivity that I still remain on even through these setbacks and to a point where I too can live a pretty much normal life just like the rest of the folks who have lupus or don’t have lupus.

Taking control of my life, my stress, my lupus....

Stress, Illness and Sunlight are the only enemies of your disease when you can alleviate any culprits of these three things do so because your life depends on it and I don’t just speak of living or dying I speak of living productively and happy or living miserable in pain and flares from stress that isn’t and shouldn’t be there because if it is coming from a person its relatively easy to see how much they truly care about you especially when you have told them over and over to stop – don’t be afraid though to take control of your life, your disease and your well being for fear of hurting someone’s feelings if they are not respecting and being a part of the healing process you are only hurting yourself more by allowing it. In allowing it you let Lupus control you instead of you controlling Lupus which can be done especially if you do everything you can to ensure that you are keeping your outlaw behind bars and not attacking you. Stay positive – stay in control and stay true to your heart and your desire to live a normal life like other people with Lupus do everyday as much as their body will let them but know that – no life won’t be perfect – there will be stress but most of the normal every day stuff you can get through. Yes you might have flare ups here and there when you let your plate get too full but don’t start with a full plate or as I did with a plate that was overflowing already and expect that anything drug wise or doctor wise can fix that – only you can and that is what I have been trying to do – right now I can’t say that its fixed – that things will stop on the problem I’ve been dealing with but I can say I am taking positive steps each day toward making that happen and will continue to do that and take this as it was a lesson well learned about how one needs to take control of their disease, their body, their lives and their wellness.  Everyday is a new day and with each new day you have the same opportunities to change the things you can so that the things you cannot change won’t be so overwhelming that you end up in the situation I am in.

So status update I reckon would be I’m getting back on track – though I have to redo the whole process for another month in hopes of us (my doctor and I) can make well informed and sound decisions about my long term goals – I’ve been pretty much in hibernation due to not feeling well but not once have I allowed myself to lose hope – instead I have chosen to take the steps I need to take whether they hurt or not so that in the overall scheme of things I don’t wake up every day fighting just to get through the day – it will work this time because this time what was the reason I’m not where I should be isn’t going to be in control of my stress factors – I am and knowing that and choosing this path is already proving to return me back on track and alive with a positive and hopeful outlook.