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Archive for the ‘Multiple Sclerosis’ Category

    Affix your own mask first….

When you get on an airplane, its one of the first things they tell you. In the event of an emergency when air masks are deployed, you should always set up your own first. Why?  Because you can’t help others if you are dead. You have roughly 30 seconds to get your mask on.  Seems simple enough… yet.. there is a reason why the reminder is issued.

From the time we’re children we’re told not to think of ourselves first. We’re told its selfish. We’re told its disrespectful, but we are told all of these things without any context. We are told it in a very overly simplified way (probably because we are children) as if it is always 100% the best way to maneuver always. When we get older, and things graduate beyond sharing our toys, taking the last seat when someone else would benefit more from it… it gets forgotten sometimes to teach us that in fact, there are some situations in which our own clarity and well-being actually needs to be given more priority in order to be effective in what we do. You are able to give more and help more if you yourself are stable.

Put another way, you are far more able to help others find stability… if you have found it first.

I’m personally experiencing a down time. I’ve gotten into that rut.

The world is swirling around me with concerns and issues. Some mine, some my family and friends, some my communities, some my countries.  I’ve been feeling tapped out and pretty much felt suffocated, like I have no room to move or work. Limited resources to work with, and inability to be as productive as I feel I “should be”. Feeling like I’m barely getting by, and not accomplishing some needed things.

Truth is though… that is the story of everyone.

Even though I feel so spent.. truth is I need to admit to myself that I’ve not been doing “everything” I could, and a big part of that is because I’ve gotten in the habit of plain ignoring me.  If I’m to accomplish anything at all, I need to first make sure that I’m not “dead.”

This means that even though my husband’s health situation isn’t resolved, we actually have done work there. He is currently on medicines, he is figuring out his routines. The smart side of me knows that some of the things he says and does isn’t really about me or the kids at all. All the emotions and negativity when those times come… Its about how uncomfortable he is… uncomfortable with himself, with his place, with his sense of value. A good chunk of how we live this life is seated in how we choose to react and the attitudes that we allow ourselves to take on….. and in the end it doesn’t matter who around us, or what they say or do for us… we choose our willingness to change our own minds and our own situations. In the end I can’t do this for him.

I can be supportive, but not at the detriment of myself otherwise there may be a time where I can’t help him even a little. If I’m honest, I’ve been afraid to go get help for me, because it might take away from what he or the kids need… but if I don’t stop that, and begin to work some self care into that equation too.. then I won’t be able to help them even the little that I currently am able to.

So…

I’m going to the doctor today. Going to talk about this current issues I’ve been experiencing. Going to re-open the possibility of getting a new neurologist, and I’m going alone. This way the conversation doesn’t get hijacked to other’s issues. I’m better at hiding my issues, and seem to not be trustworthy enough to not let someone take focus off of me, I generally welcome it. Mostly because I get this horrible uncomfortable feeling and get super self conscious when I have to talk to someone about me. Give me any other topic… please.

Anyhow.. this is the plan..

 

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Sometimes you run because you have to. Because if you don’t then the worries you’ve been unable to deal with are able to catch up, and it kills you to let them. They eat away at your heart and soul, and you can’t allow that because if you do, there is no safety net. There is no backup support. There is no one else to shoulder this with, so you can’t allow them to catch you. You just keep pushing through, going a day at a time. Hoping and praying to the universe that it will all be ok if you can push a little longer…. but sometimes you stumble. Sometimes they do catch up, and they overtake you, and unfortunately, they have tonight, so I find myself unable to sleep and in tears in front of my computer. Typing away to try and get these feelings off…. to lay them somewhere else, because I’m already tired, but I still have to work in the morning.

You just keep pushing through, going a day at a time. Hoping and praying to the universe that it will all be ok if you can push a little longer…. but sometimes you stumble. Sometimes they do catch up, and sometimes they overtake you, and unfortunately, they have tonight. This is why I find myself unable to sleep for the last four hours and hopelessly in tears in front of my computer. Typing away to try and relieve myself of some of this pressure. Desperately wishing to get these feelings off of me….. to lay them somewhere else, because I’m already tired, but I still have to work in the morning. Tomorrow my eyes will be puffy, and I will once again likely blame allergies to people who care to ask why I’m a bit puffy, and I’ll feel bad to do that but the alternative is to explain too many things that they weren’t really in the position, nor wanting to hear in the first place… besides, the last thing I want or need is sympathy, because all it does is compound how inept I feel at not being able to manage and take care of those around me let alone myself.

How expensive peace of mind seems to be, and how odd it is that people are so opinionated on whether someone else “deserves” it or not. I sometimes wonder what it is you have to do to “earn” it? I’m at this point able to work full time and push through everything, but I still am not able to afford it. Its all I can do to keep this family of mine going in maintenance mode. Where just enough is taken care of to keep them fed, housed, and clothed, but not much more.

Deon’s troubles with Fibromyalgia and the chronic inflammation issues keep piling up. He falls more than twice a week, thankfully able to get himself back up after a bit… but what do I do when that is not the case? His medicines keep getting added to, and like me, only seem to be able to keep him in a maintenance mode… to where it keeps him somewhat stable-ish, but doesn’t resolve the pain or the issues he’s experiencing, just minimizes them. Don’t get me wrong, I’m thankful, and he is too, but it does get to him, and makes him chaotic and emotional, which makes him question everything, and I have no answers…. none at all. He should be going to specialists that we’ve been referred to, but honestly, they haven’t been helpful in the past, and at this point in “maintenance mode” there really isn’t the money to spend on things that don’t help. This sounds horrible of me to say, but I can’t afford it at the moment to continue to see Doctors who nickel and dime you without giving direction nor actual assistance.

My youngest son used to be a catcher for his baseball team. Now he mainly catches anything and every sickness possible. He gets the flu, or a cold so often that we got a letter from the “dropout” specialist warning us that we were reported to them because he has missed so many days. Luckily he is a self-driven student and he catches up in his classes pretty quickly, and once the teachers get around to grading everything, he is still somehow on honor roll. I’m not exactly sure what they want us to do.. send him in sick so he can infect others?  It usually takes a day or two and then he shakes it off, so we haven’t even been making Doctor appointments for him, we tend to wait a day or two… which drives me crazy with worry, yet I know “it will probably be alright”, so we wait first to see, because if we took him in each time, the co-pays alone would be an actual problem.

My older son, he is on this emotional roller coaster at the moment. It worries me because my coworker just lost her son of the same age to just that. I’m having a hard time getting thru to him, I don’t know that he ever really gets the lessons and coping strategies I’m trying to teach him, he gets caught up in the emotional part and just won’t talk to anyone about anything real. He covers it up with being silly, but I can see he’s actually weighed down internally. No clue if I’m handling things with him right or not, he’s so different from my other two. I would like to get him in to see a counselor and have them talk to him and give me any possible hints as to what I could do differently, because I don’t feel like what I’m doing is working, and I’ve not got much time left with him really. Not because I think he would do anything (course my coworker never thought it either), but mainly because he is going to be eighteen this year and released on the world, and I just hope he has the tools to grow the rest of the way and cope in a healthy way with what the world is.

When it comes to me, the truth is… I’m tired, and I hurt, and I’m kinda tired of hurting. MS has thrown at me all the off the wall and odd symptoms to which I have to try and weed through if something is serious or not… If I should try and get help, or wait it out in case it simply dissipates with sleep and quiet time or distraction.

I’m up this evening because I have this odd sensation on my neck, ear, and a small spot on the back of my head that the nerves are telling me that they hurt and itch like crazy. No bite that I can find, no odd rash or discoloration at all… yet its bad enough to interrupt my sleep and not let me be able to rest. Stupid I know, and I’ll do what I always do, but I worry. At some point, my normal measures may not be a “good enough” option.

I actually had to say no to my Daughter’s Mother’s Day offer of getting me a massage, because at the moment the skin on the left side plain hurts to be touched by anything other than clothes. I have to keep covered to find relief which makes the 96 degrees Fahrenheit days we’ve been having kind of tricky.  I wouldn’t have been able to handle it right now while this is going on.

Truth is that I’ve not even seen a neurologist in the past four years. I was referred to one last year, and they said they’d call me in six months and that was roughly eight months ago. I should be diligent… I should be advocating to get a new one as soon as possible. The reality is though that everytime I get one, they make me do tests that take three years to pay off, and they get nothing helpful out of them. They just tell me what I already know by simply living my life. That I’m decently stable compared to others with MS, and that if I want, I could go on medicines, but all it would do is play decoy to distract from other inflammation in my system, and “possibly” cause me to have “less” symptoms “IF” the MS was acting up. Not a sure thing though, kind of a gamble… oh and a side effect is feeling like you have the flu every day. I’ve been there, I’ve done that, it isn’t worth the gamble when at the moment I seem to be able to rest to minimize things… course I can’t rest right now. ><

It makes me question myself to always be in this “maintenance mode” of limping along… pushing a “little longer’… hoping that the universe allows issues with those I take care of, and with me to “just work out eventually.” till I get to the point where I actually can get things resolved.

In every other area of my life, I’m so pro-active. I plan, I figure out ways to resolve it now, adapt or move on… in order to keep going.

In this health care taking aspect, I seem to fail to be able to have that same nature and it’s really getting to me.

I should be getting Deon to a specialist to see what else could be done. I should be taking my youngest in more often to the Doctor so that we can figure out why he’s so susceptible to picking up sicknesses, and figuring out how we can help that. I should be getting my older son to a counselor so that he has someone to talk to since he can’t seem to open up to me without me constantly prying at him. I should not be waiting to get back under someone’s care for this MS….. but, in the world, we live in, that all requires money which I have just enough to just keep us getting by in this  “maintenance mode.”

All this talk about healthcare in the government right now, and honestly they are simpletons and nowhere near resolving this when the main priority they seem to focus on is on the existence of plans you could buy into, instead of the affordability of care needed in the first place. I have insurance, but right now it does me little good because I only end up being able to afford the occasional “maintenance” visits, but nothing further.

But it is what it is… and I’ll keep going as long as I can. I have work in two hours now …. it’s going to be a long day.

Admitting frustration relieves a bit of this, so maybe now I can shake it off, just hope the universe is kind in the level of severity it presents us with, and I’ll begin my run again.

I don’t run because I’m scared, because truly if the resources were there I’d be all over all of these things rather than doing a little for this one now, and a little for another next payday and so on.   I don’t think I run and try to avoid focusing too intently on these worries because I’m scared… I think I run in the hopes that I’ll reach a point where I’ll find what I need in order to just deal with them head on.

Hopefully, after getting this out I’ll be lighter and able to be faster than the worries for a bit. Hopefully, they won’t catch me and consume me again this way again for a little while longer. It’s time to go maintain this life as best I can… now… where were those running shoes?

 

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Unbeknownst to anyone, (least I hope) I seem to have an internal crisis on my hands and in my heart. This past year has been a particularly hard one for me to get through. Not because there is any excuse, but almost because there is no excuse. Sheer confusion really. Sure there’s been frustrations, and the MS and things have made me had to change course a bit, but nothing that isn’t able to be dealt with. Mine is a small amount of pain comparatively to what I hear that others deal with. (And Yes I realize how lucky I am that I can still say that and that I have no right to complain.)

I just don’t understand where I am. I seem to have taken a wrong turn somewhere and I just feel really lost. There is no reason for me to feel as down as I’ve felt this last year. I have really really been unhappy and just felt uninspired and low. Work has had its ups and downs, but overall isn’t bad, other than I want to do more and learn something… anything.. new, but that maybe that comes with a little more time and patience on my part.

Home has been alright, a little frustrating trying to figure out something for Hubby to do. I never really understood how much I really need my own time to center and clear my own thoughts until I got to the point where I get no alone time to do that. None… for the last two years.

There is always someone around needing something or plain wanting attention or to be entertained. (And yes I realize how selfish that sounds) I get so very frustrated being responsible for entertaining others who don’t have any idea what makes them happy. Don’t get me wrong, I’m not unhappy with the Hubby, I love him very much, and he’s surprising and amazing on so many levels that no one else really knows, but when you marry someone so very different than you, it can be a little challenging (though workable and worth it). I’m happy with my husband and our family, so that isn’t where the issue is.

When you get to that point, and there is no real pin point of a reason, it takes some real soul searching to figure out what is the actual root of the issue. The only reason I can think of has to be me and poor coping strategies, bad management. It shouldn’t be so hard to feel ok where I am.

I just get to the point where I just feel like a shell, and that no one cares what I have to contribute anyway. My purpose seems to be to keep others afloat.
I am a facilitator by nature. I have all these ideas, and flush them through, picking out what details would need to be addressed and marking out solutions to do so. I put so much energy into finding the process and the working out the means. I will even push through what steps I feel need to be done in order to get something moving, to get things going in the desired direction. I do this so often and so often the energy is wasted. Either I’m bad at explaining, or others are too bored to listen, or just plain really don’t care.. Not as much as I do anyway. I suppose it would be so much easier if I could care a bit less… If I could be ok to just be, and not feel responsible to contribute something, or make things better.. to be content to rest on withered laurels….

But then what kind of existence is that? To live the life as a pure consumer, someone who takes, more than they give. I fear that its a common existence in this day and age. But its not something I can be ok with in the root of my center.

I’m saddened to feel like I’m no where near achieving what I’m here to do. Like my life isn’t having an impact, and thinking that way has a way of dulling the soul’s fire, and while I totally know better, I fall in these ruts occasionally. I admit it, the optimist is not always optimistic.

I just want something to be excited about. Some glimmer of hope that it matters and that I’m more than just another automaton going through the motions.

I want to thrive and be giddy.. I want to laugh heartily. I want an endeavor that when I put my energy and thought into it, that it comes out being viable, not a waste of time or an unappreciated gift. I want something I’m associated with to be a masterpiece. Something that causes joy and inspires and encourages the soul.

Its just hard though. Life has me under its thumb at the moment. I just need to wiggle my way out and reunite with my own hope and faith.

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Its quiet, the kids have gone to bed and Deon is upstairs reading. I sit here alone with my thoughts.  To be honest I’ve felt a bit overwhelmed lately.I’m not sure I’ve been handling it like I should. I’ve been worrying a lot, and letting my fears get to me. It does no good to self paralyze. I think this thing with my left eye has thrown me a bit. It changes daily, which I guess is a good sign because if it was totally getting worse, then I wouldn’t have days that I could see better than others.  Sounds reasonable anyway right? I notice sometimes when I go outside when its warm, my left eye will cloud up rather quickly. If I go back inside, it seems to clear back up some as I cool down. I used to love summer, but I’ve been spending most of my time hiding from it this year.

I’ve decided that our worst problems in this life are spawned from two perceptions we put on ourselves. Fear and Pride I think are the most damaging thoughts a person can entertain on a regular basis. The truth of it is, that even if my eye doesn’t fully recover, its fear and pride that would stifle me more than not being able to see well, or at all. If I’m honest with myself, I can realize that should it get worse even, its not like I wouldn’t get through it. I’d  learn to manage. So many live with far worse than the brush of an issue I’ve dealt with thus far, and do so quite successfully on a daily basis. What good does it do to be fearful, except to minimize my own enjoyment of what I have now. What good does it do to base pride on something I have no control over?  Truly?

This next year seems full of uncertainties.  New adventures to be had no doubt. Things are still up in the air with Deon’s shoulder which is more accurately described now as his upper spine. To be honest I’m not sure if there will ever be a “solution” for it. This may be the way it is going to be, and if that is the case then paralyzing myself with fear does no good. In the end to survive we live, learn and move on, or we don’t.. and it is our choice.

I definitely do not like having him be in pain, and him having to be careful even with doing simple things, but honestly I guess it’s similar to what he has to deal with in regards to me now with the MS the last three years.  I’m just lucky my limitations haven’t totally changed what I can do for work. He hasn’t been so lucky. We both have to be careful what we do which definitely wounds pride.  Its frustrating, but everyone has their limitations.

Not ideal financially, but the kids have benefited with having him home, and it has been less stressful on me than before when I had to daily drive them place to place, sometimes multiple times to be watched while we both worked. Worst case, and say this is just how the situation will play out, its not a total loss, and I think that is important to realize. The thing is going to be helping him keep his spirits up when he (like most men, and honestly most people) doesn’t see the value of time spent taking care of things at home vs. time spent at a job making money.  Family should be more important.. its odd how often we allow money to displace our priorities and perverse what we value. I am married to an awesome man who is extremely caring, and who without, I don’t know how I would have had the strength to get through these last 3 years. Honestly. When I had to change my diet, he was right there looking up recipes and finding things that we could have instead. Getting extremely creative and learning trying new cooking styles to make the transition easier. He is the one that gets after me when I know I’m pushing my health, but not wanting to admit it. He has been completely amazing. I am very lucky, but he doesn’t see things like I do, and devalues what he does, because it doesn’t “bring in money”.

Pride is good when it holds you to do a good job at what you are doing, but it can be really bad when it prevents you from healthfully coping with situations that aren’t ideal.

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So its been over a month since my last update. To be honest its been crazy and I just haven’t felt up to posting anything.

*Spoiler Alert* Probably not an upbeat post, and definitely a little emotional and tired, and a bit of an over share,  so keep that in mind if you decide to read any farther.  From this point on, it may even be a bit whiny I realize, as I know there are people in far worse situations that would laugh or roll their eyes at this, but know that I vent so I can bounce back.

Deon got his MRI back a while ago. This time around it seems that they have finally identified what is going on.  The problem seems to stem from some narrowing in some areas of his upper spine. Not sure what will come of it yet. He will probably be going to OHSU if it becomes unbearable again.  After having a quick conversion with someone up there, he has opted to wait to go see them as the pain is manageable at the moment. The issue I see is that it takes two weeks to see someone, so if it acts up worse, it will be two weeks later before he can be looked at. I know he’s just not wanting to create any more bills than he has to.

My left eye had been getting better. I had been back to around 78 %, but I did too much or something because last week I had a day where I ended up having a horrible headache and it kind of got worse again.  I’m  frustrated. On the bright side, today does seem to be a little better than yesterday, so hopefully it was just a small set back that will clear back up more as time goes on. Trying to stay positive.

I received my 2nd bill for my MRI that I had at the end of June. I was kind of excited when I got my first one and it said my portion was a little under three hundred dollars.  I rearranged some things, and got it paid, and was kind of hoping that would have been all of it. I know that I definitely should not have even considered that to be the end of it.   My initial guess of $2000.00 after insurance was sadly a quite bit under the actual mark, and will actually end up being closer to double that.. Odd when you owe less on your car, then the cost of a single medical test.  I’ll call this new hospital and get something worked out so I can start chipping away at it. Praying that they end up being nice and allowing me to make a manageable payment that will go towards both Deon & my bills.  We don’t yet know what his total is either. I really dislike owing money, it makes me feel so bad. The last time I owed this much for a doctor bill, it took me three years to pay it. The other hospital wasn’t willing to take payments over time, and sent me to collections even though I was making monthly payments, all because I couldn’t fulfill a big enough chunk of it within 90 days. Had to work out a payment plan with collections group  and honestly we would of had another 3/4 of a year except we ended up  getting taxes back this year and used it to get paid off.

I’ve always been a believer in personal responsibility, and that you have to be your own advocate when it comes to your health, but its becoming increasingly evident why people put medical things off.   I now kind of wish we had waited on my MRI, especially since it just ended up saying things were ok. Hind sight is 20/20 I suppose. An odd saying to use I guess,  since it was actually my eye that kind of convinced me to go ahead and have the MRI done because I was scared..  ironic huh?  I think I would have rather spent the money getting something further figured out for Deon.  He’s frustrated because its been a year, and he’s still not working, and in honesty at this point I don’t know what he could do. Sometimes the simplest action will make his shoulders swell up. He definitely can’t go back to anything he had previously done. We both are a bit lost in figuring out what could or should be next. I just hope nothing further pops up for awhile, one can only pray I guess.

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Met with my Neurologist on Thursday.  He had gotten the results of my MRI. In fact he went through them with me on the computer, which was a nice change from the last time.

  • No new or active MS lesions so no evidence of any progression was found
  • No damage showed up on the MRI with my left eye, which is good. It had already been bugging for a week and a half at that point.  So because it wasn’t readily obvious it may mean there is more of a chance that my sight may improve after this bout is over… probably another month though. If it gets to bad I may need to see about getting some steroids. I’m really praying to avoid that.  It seems to vary with how much it bothers me.. but its not made me dizzy enough to need my eye patch in three days, so I’m hoping that it means its getting better. Still really blurry, time will tell.. In honesty, going blind has always kinda freaked me out a bit. Hopefully in a month, this will have just been a rough patch that is behind me.
  • MRI shows that I tend to hold my stress in my neck.. its actually kinda wearing my neck bones a bit.  (I really have to relax.. its never been something I’ve been good at..  sometimes I really don’t think I know how.. >< )
  • Overall good news..  offered to start me on medicine if I desired, although wasn’t suggesting that I needed too.  I was thankful because with this Neurologist we seem to be on the same page. I am comfortable that he will strongly suggest it if he really thinks I “need” it.
  • Same instructions, eat healthy, get adequate sleep, keep up with the vitamins (plus the extra ones he suggested), avoid the heat.. etc..

My husband has been really great.  He’s been trying to keep the house cool for me when I get home from work. I actually had to ask him to let it get a bit warmer.. lol. We’ve had a streak of warm weather the last few days.. but it cooling down I think

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Had my MRI done yesterday.  This time around it was at the hospital where my new Neurologist’s office is stationed rather than the local hospital. Quite a difference. This time there was no hounding for the entire payment before the test, in fact they didn’t even bring it up. It wasn’t until I mentioned it, that they suggested I wait until after they billed insurance, but that If I wanted to make a payment, I could go to the billing office after my appointment.

They also offered up music to listen to while having the MRI done. I chose piano music because its calming.. and because I think I may just be getting older.. lol. Kinda like instrumentals a lot more now, and I don’t even play an instrument and don’t know what else to attribute the change in taste to.. lol.  I was very thankful for the music by the second hour.   Three with contrast and three without ended up being 2 and 1/2 hours… the longest MRI so far.

Hopefully they find that the MS hasn’t progressed much. I’m a little worried since I’m having such issue with my left eye, but most my other symptoms are pretty minimal at the moment, so I hope it balances out what “results” they gather from the test.  I should know that information on the 8th when I visit with the neurologist  again. Oddly, this time around I’m not as anxious for the results.  I just think its not going to change anything except possibly the urgency that others feel regarding my disease. I was finally starting to not feel pressured about the focus of my treatment, and I don’t want that to change. Its stressful enough.

Regarding my left eye problem.. well my left eye is just weird. Yesterday I wore an eye patch most of the day (except when in the MRI) as it was really sensitive and had “darker brown clouds”  and today, even though the majority of the vision is still blurred, the “clouds” are lighter color again and I can now make out a few words when trying to read with it alone.  Not sure if its getting better, but it is getting different. Time will tell I guess.

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