Tag Archives: medicine

The real cost of being sick

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 There is so much more to chronic illness expenses than doctors appointments, tests, and prescriptions. Those are the more obvious expenses. Those are costs that you can control to a certain extent with the type of health insurance  you have. These are some of the less obvious costs…

Lets start with diet.  I don’t mean the kind of diet you go on when you want to lose weight. I mean the kind of diet that completely changes how you eat. I won’t say that I avoid trigger foods altogether–I am human. I know [emotional? you just said “eating” which is good!] eating it is not the best idea, but sometimes it’s emotional therapy.

Many times the prescriptions that people with chronic illness take can cause digestion and gastrointestinal  issues as well. What that means for me is I can not rely on a good quality multivitamin to catch any lapse in diet. A good quality highly absorbable multivitamin can cost fifteen dollars or more per month.

The reality is fresh fruits and vegetables cost almost twice as much as canned or frozen fruit. Why is this an issue? Well this ties into the digestion issues. Many people with chronic illness cannot process the additives, extra sugar, processed sugar, and preservatives as well. This makes canned and frozen fruits not the best choice. I am not saying I never get these but its not my preferred choice, and I always have more issues after eating these foods.  I am lucky in my diet the only issues I have are preservatives, additives, lactose and corn.  This still makes it difficult, it could be so much worse.

While my family normally tend to be fairly healthy eating to begin with even before I got sick, it’s not even a choice now. It is how we have to live.  This is not necessarily a bad thing, just another hidden cost people don’t think about. I did do about six weeks of juicing with fresh fruits and veggies. It worked really well, and I did feel better. It cost me  about forty dollars a week. When it came down to it, I had to start focusing on making sure my family had enough groceries for the week and not just enough to juice.  Its great to juice or make smoothies, but I still have to feed my family.

Next we have what I like to call my toolbox. A list of things that you can do to help alleviate some of the chronic pain that goes along with chronic illness. Oh just take an Epsom salt bath every night. I use Icy hot and love it. Pick up some Tiger Balm. Pain patches, supplements, and exercise are what helps me.  It is one thing to say that but here is the hidden cost.  To be effective you need to use at least a cup of Epsom salt per bath, while recommended amount is two. At one point in order to take a just plain Epsom salt bath every night I was paying roughly fifteen dollars for salt each week.  This is just plain epsom salts. This was not for the ones that have added benefits of lavender or menthol or eucalyptus, rosemary or ginger added to them.  Not to mention its not like I can just jump into the bath tub any old time I need to.

Then you also pick up a variation of rubs, creams, and ointments. Each of these run from as cheap as five dollars up to twenty  bucks each. Since we often use them multiple times daily, we might get a week or two out of a tube or bottle–if we are lucky. Pain patches, however wonderful they are, are one short use and they are done. Five dollars for five patches that if you stretch it can last you four days. It gets to a point that you can easily be spending fifty to sixty dollars a month on these kinds of things.

There are some more natural remedies that you can take to help bolster the prescriptions that often you have to take. I have gone off a lot of prescription medications and have gotten down to my bare essentials so to speak. My bare essential prescription cost is about  [$150] {or} [One hundred fifty] every three months.  It was almost that a month at one point in time.

It is easy to say “go pick up a supplement.” Looking at quality matters a lot here. Turmeric, which is great for chronic pain, is a minimum of ten dollars for a month supply. Then often people in chronic pain use Magnesium which can be relatively cheap, again the type and quality counts here. The one I have had the best success with is fifteen dollars a month. I use a strong omega three supplement as I have both heart issues and mental health issues, and that helps with both.  I also take Melatonin as opposed to a prescription sleeping aid.  It is not hard for me to spend fifty dollars or more on supplements [a month? how long?]. Fifty dollars is where I am at right now with just the basic cannot-do-without supplements.

This is really just the first layer of unseen costs of being chronically ill.  This is not even taking into consideration that the kind of mattress you sleep on matters, keeping shoes fresh and supportive by changing them out every three to six months.

This does not even take into consideration that people that have chronic illnesses tend to not be able to work but yet not meet the terms for disability through the government.  I am lucky I have decent insurance and my costs are low comparatively speaking. Shockingly enough, to many the answer is not through medicaid, I actually paid more and struggled more going through the medicaid system.  The stress the system puts you through to jump through the hoops to get what you need……it’s unbelievable.  Even with the good insurance we have now my out of pocket expenses are anywhere from 100-150 a month. This is not including prescriptions that are significantly cheaper with insurance.  This is what I have it boiled down to as essentials. It could easily be twice that.

I often deal with people who are very flippant about my chronic issues because they are not visible nor are they the same from day-to-day.  To date my diagnoses are: Myofascial Pain Syndrome; Chronic Fatigue Syndrome; Fibromyalgia; Degenerative Disc Disease of cervical, thoracic , and lumbar spine; Irritable Bowl Syndrome triggered by a corn intolerance; Supra-Ventricular Tachycardia;  Raynauds; malabsorption of Vitamin D, Potassium, and Magnesium; severe outdoor allergies which borders on allergic asthma; OCD with tendrils of ADD.

I don’t look sick. I don’t like to talk about being sick or what I can or can’t do. If I am discussing it in detail with you, I trust you a lot.  I am not willing to continually prove my conditions to people over and over. What would I do to do that? Carry X-rays and MRI reports and blood test results around with me constantly? I am not being lazy or taking the easy way out and yes I can read that in your eyes. After dealing with Doctor after Doctor after Doctor who did not believe me, I can tell exactly who does and doesn’t believe me. Some of the disbelief comes because I was super active and really did a lot one day. The next day it takes everything I have to get out of bed. I am paying for being so active. When you have a kid, you tend to push yourself to do more, for them.

I have gone through the disability process with the government. Essentially they believe I have the issues I have but because I can parent to some extent and function to some extent, I am not disabled. What I was doing when I was working and trying to parent was not functioning.  I was a mess. I could not enjoy any time with my daughter. I focused on getting through the day til I could medicate and hopefully sleep. I had no quality of life, not to mention the immense damage to my organs that the prescriptions were doing. It has taken two years off of three medications to get my liver and kidney functions to somewhat normal levels. TWO YEARS.

It has been a long hard road to get my health back to some extent.  We are lucky that we have family and close  friends who understand and help us. We are functioning, barely, at a fourth of what we were earning when both of us worked full time, and this is with my husband working two jobs to help support us. If anything ever happened and he could not work, we would be completely screwed.

************************************** some exciting news in store***********************************************************

 

Below is a brief outline of the campaign, which illustrates what we’re trying to achieve and how people living with chronic conditions can help.

 

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions. We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

 

 

We’d like to know the following about the patients that use your services;

 

  • How long they’ve had their condition.
  • What their specific condition is.
  • How it affects them (professionally, socially, emotionally)
  • What things they have to purchase in relation to their condition.
  • What other financial disadvantages they face.
  • Roughly how much they spend per month in relation to their condition.
  • How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

 

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

 

Patients can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

 

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

 

The precarious state of my sanity, aka week five summer break

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One month down, I am over it. Already. I just want to sleep. I am over the running here and there. I am over the heat. So so so over the heat. I enjoy spending time with my daughter. Really I do. I also enjoy just having Mommy time. Summertime does not equal enough Mommy time. I am again finding myself in need of remembering to keep it balanced. She does not have to be entertained every second.

I have dealt with more flares than I expected. We had more roadblocks than I expected. I always feel like I did something to cause the flare. I let my guard down somehow. I spend so much time reviewing what I have and have not been doing to keep myself at the same level. Have I been resting enough? What about my diet? Have I been active enough? On one hand I know its more of a balance thing and its not possible to keep it in balance always.  Flares are gonna happen no matter what.  I also know I have a tendency to push when I know I am starting a flare. It works for me sometimes, when the kid is in school. It is not working for me with her here. I even added back in almost nightly baths in Epsom salt with menthol and lavender.

I am trying to remember I need to be patient with myself as much as I do with the kid. I knew I would flare. I guess I just forgot how badly I could flare. If that makes any sense at all.So here is what we did accomplish:

Sunday June 29th

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A very mentally stimulating sermon on Sunday. We are lucky to have the talented Barbara G Walker in our congregation. I love when I am intellectually stimulated to learn more on the subject! All in all a very relaxing and enjoyable day.

Monday June 30th

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Monday we walked to my cleaning job. Well I walked she rode her bike. She is getting really good at it. She lost TV and computer privileges so she had to read the whole hour and half of my cleaning. As you can see it was tough.  Neeka loves it though.

We also found this chair for the kid. No we did not buy it. It was some ridiculous price and space is at a premium here. We did however take a picture. It lasts longer that way.

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Spritzers were my thing when I was pregnant with her. She thinks she has a soda.  Little bit tricky mom right there.

Tuesday July 1st

We spent the morning doing Math and reading and we skipped writing in favor of sewing her purse. A light lunch and we were off to a library class.  We car pooled with Princess P and family as the one we went to is ….a bit creepy. There is a large homeless population that congregates around the library. We used to go to this one a lot. It is kinda far away though and there are several nicer ones closer. The wonderful world of invertebrates, so interesting! Starfish are now called Sea stars because they are not really fish. Whatever, Patrick will always be a starfish to me.  There was even a hermit crab……race.  The marine biologist was great and stressed the importance of conservation. He gathers all his specimens from the sea and returns them after the class.  So even he didn’t know how the races would go.

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Princess P was more interested in exploring so I took her out to read and explore. It was a real hardship to spend some quality quiet time with her, let me tell you. The lap sitting, the little hands, the kisses, and yes even the sassy.

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Wednesday July 2nd

The same marine biologist had a class at a different library. He said it would be the same content but that each class is customized to what the kids were interested in. The kid was a bit more willing to touch things at this class , there were a few new preserved animals and live animals. This one we also heard a story about tides and there was a discussion about tides, how they work, how far apart they are, why they are good.

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Another hermit crab race with new hermit crabs. This time they raced across the US….however the oceans were a big draw! lol.

Thursday July 3rd

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Math tutor lesson .. Daddy sat in on this one for the beginning while Mommy snuck out for breakfast with a friend. We did our hour of reading , an a writing prompt. Then we just took the rest of the day off. The  storm passing through is really messing with me. I know I am on the outskirts of this flare and I really want to rest but I also suspect the amount I have been resting is also messing with my sleep at night as I have not slept well the past two nights.  This is a chronic illness rock and a hard place.

Friday July 4th

This year we were really popular and got three invitations to fourth BBQ’s. We were going to go to Princess P’s house however without a car, transportation is an issue. Instead we went to a friend’s house who is much closer.Much more exciting though was that we found our new car! That will probably have it’s own blog post though because I am that excited about it. Here is a sneak peak though

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We had a great dinner…..

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We went downtown and parked the car , we then walked to get Gelatto and then down to the beach.

It was nothing short of gorgeous.

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It took three weeks or better but I finally got to the beach again! Hopefully now that we have a car we can go more often as originally planned.

Saturday July 5th

Today is all about recovering. I have not even gotten out of my pj’s. I have not had coffee. I don’t want to wake up. I have not had the tv on.  I am paying the price for not only being so active yesterday but also my diet choices yesterday. The bathroom and I have spent  a lot of quality time together. I doubt I will even get dressed today let alone get out of bed for more than a few minutes. Medication , possibly a bath and lots of water are on the menu today.  My stress level and even my conscientiousness level will go down dramatically as the kid will be off to a sleep over.

Don’t be so hard

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It occurred to me today that I have been unreasonably hard on myself. I have been wondering why things I used to be able to do are such a struggle lately. It was only in discussion over some of this with a friend that I realized the difference was medication. I am not on prednisone, soma and Lortab. That I have taken steps that means I can do less but will live longer, and healthier.

When I went off the medications it was not by choice. I was sure I was going to be back right on them as soon as I found a doctor that would listen. Between the weight gain and how sedentary my life had become, I knew I needed to make changes. I just didn’t want to think about it too closely.I dealt with it slowly and piece by piece.

Sometimes just realizing that you are being unreasonably hard on yourself, that allows you to relax a little. I am going to try and focus more on what I have done each day than what I have not done. I am going to try and remember that being off those medications is a good thing and that it just makes self care even more important.

I have realized that I have depended on certain activities to relieve stress. The problem is they are not relieving stress. It took me a while to notice this. It is time to switch up some of my self care things.  Summer is coming. Well really in Florida Summer never leaves but the kid is out of school in a week.  There is going to be more variety. More embracing what and who we are. There is just going to be more.

I know I have said this in the past. I have done it in the past. Each time I am a step closer to where I want to be. I just have to remember that and not get frustrated that it feels like I am back where I started. I am not. I know that I am not when I really stop and look back.  Its a process. Sometimes its the process that is frustrating. Sometimes just acknowledging that makes it a difference. Gives us a fresh perspective and renewed motivation.

Tomorrow I turn a year older. Here is to understanding the process and embracing it all, the good  and the bad!

Never a normal doctors appointment

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Friday mornings are my roughest. I am so ready for the sleeping in on Saturday morning that sometimes happens. If it doesn’t happen the staying in bed a little longer happens. Most of the time.  Having a doctors appointment on a friday morning seemed like a good idea. I am not sure why. I know how rough I am. I got the kid out the door and to school on time. I headed to the doctors office right away because traffic is still horrible here. The tourist and snowbirds are slowly going back home…..slowly.

This was a review bloodwork and make sure my medications were all still okay. I was seeing the nurse practitioner because of a schedule conflict the doctor had. Because I can never just be a cut and dry case of ANYTHING…… my magnesium and potassium are still fluctuating still on the low side….and my thyroid is off…also on the low side…but the hashimotos study and the antibody study came back completely normal. This makes perfect sense to me, because I am used to this kind of thing. The Doctors were a bit perplexed. As I have a heart condition as well and am on medication for that, she is a bit hesitant to start thyroid medication. My heart condition is fairly well controlled with medication, however that does not mean we should take risks. If we do start medication it will be with an event monitor to make sure that I don’t have any SVT episodes(read my heart goes wacko, arrhythmia). For now we are doing thyroid level checks every three months and checking the antibodies every six months.

She was incredibly pleased with my progress on loosing weight and walking. Both of these will in the long run also help my thyroid along with my heart and other things. The progress is also why she was hesitant to start thyroid medications, afraid it will affect my heart and set me back walking and weight loss wise. We discussed diet and how juicing is helping. She was a little bothered that I only drink juice in the morning for breakfast and water. I am not a breakfast person. Unless breakfast is at ten or eleven am. She said she would like to see some grains introduced into my breakfast but since I was getting such packed nutrition from the juice she was not going to push it.  I have cut back my soda and coffee and that too will only continue to help. I told her there is one thing I do , do……the week before my period. I go with what I want, not necessarily what is healthy. We also discussed the once a week frozen yogurt. She said she wasn’t concerned because it was frozen yogurt first of all and the amount of fresh fruit I add was enough she felt the hot fudge and carob chips were an okay splurge. 

I was on prednisone for several years. During that time I had issues with skin scarring and keeping my skin moisturized enough. When I went off it , it slowly got better and went away. It is back. However she was not concerned that it was a new thing. It can take several years for skin to return to normal and will take intensive moisturizing treatments. Oh more fun. I am so horrible at remembering to do this, plus my OCD hates the texture of most of the lotion and creams.

While my magnesium and potassium oh and vitamin D levels are just slightly below level, we are still gonna keep an eye on those too. Its a relief to know that I am not taking too much because the levels I take are fairly high. It concerns me. However my body just doesn’t seem to like to hold on to those things.  Malabsorption is so tricky. Sometimes I absorb things great. Other times not so great. There is constant adjustments needed.

We then discussed the upcoming trip in August to Epcot and camping. She doesn’t see it being a problem for a low dose muscle relaxer for a week. It is one less thing for me to worry about. I can work on progress with distance in my walking. It will help with endurance. Camping and keeping up to an excited nine year old will be hard. This is just a little edge off at night to keep me going for four days.

After such a good doctor visit and leaving so pumped. I treated myself to Starbucks. Just a single shot espresso. I add sugar to it and it reminds me of Cuban coffee I used to get with my Dad. Its a nice warm fuzzy memory to set the rest of my day with. Not to mention the boost of energy and possibly being productive with housework today!

Start

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That is the key. First you have to start.
Many people assume because I go on walks, I am feeling better. It looks impressive that I walked two miles.It is impressive but it did not happen overnight. I has been over a year though since I started walking and it has been slow and steady increase.

When I first started half a mile completely fried me for the day. It was all I could do to make it back to the house.

I didn’t give up though. I kept doing it. First it was one walk every three days.. Then every other day.. then every day.

This allowed me to ease  my Fibromyalgia and arthritis ridden body  to walking. Giving myself time to deal with flares when they happen.

It wasn’t about stopping when I hurt. If I did that I would never get anywhere. You will find that there is a period of time that the walking makes you feel better. It is typically ten minutes into the walk for me. Then I can go for a bit a feel pretty decent. Then the pain returns. That’s when it is time to turn around or be heading back.

Be gentle with yourself. Fibromyalgia does not like it when we try to minimize its impact on us. Remember that you need rest after these walks. Typically there is not a lot left for me to do for the day when I take my walks. If I take them too early in the morning I am completely fried for the day.

Track your walks with a pedometer. I use an app on my phone. It helps to keep you on schedule with walking. It is also an added bonus of something to show your doctor to show you are trying.  It is also fun to see the patterns you walk on the GPS mapping part of it, at least for me it is.

It is also important to remember to hydrate yourself. If you don’t like the taste of water. I recommend chugging at least eight oz of water prior and after the walks. Remember to keep hydrating through out the day.  I have found that people with Fibromyalgia need more hydration that normal.  It helps your muscles in so many ways.

Something else that helps is having someone else go on the walks with you. When I first started out I went with my husband or my best friend, neither of them have chronic illnesses but, they know when I am pushing myself too much. Now I tend to walk with another friend who has chronic illnesses. We keep each other accountable for walking. Now we tend to walk twice a week and we are averaging two and half miles. Sometimes it is too much for me, sometimes it is too much for her. We get each other through it.

Keep playing around with it and find what works for you. It maybe that it works better for you to walk in the morning. It maybe something you do by yourself,for yourself. I promise you will find it helps in so many ways than just exhausting you.

Walking can help improve your mental state, ease anxiety, it boosts your energy levels, it increases your Vitamin D intake(since most people walk outside in the sun). It strengthens your heart and other muscles, it aids weight loss. It can also help prevent dementia and lower the risk for other disease. I also find that when I am dedicated to walking, I sleep better at night too.

It is to your benefit to get out there and walk. So get out there and just START!

 

Pacing is a must

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It is a must! As in not an option.

Sometimes pacing is:

Take the stuff out of the dryer. put the washer to the dryer .new stuff in the dryer…and lay down. Sometimes you have to lay down the entire 60 minutes that the laundry is going.

Sometimes it is setting an alarm for fifteen minutes and chipping away at the housework then setting an alarm for thirty minutes of rest.

What is not pacing is what I tend to do…..

Get up take the kid to school go clean a house, go to lunch with a friend hit the grocery store pick up the kid, come home make dinner, get the kid to do homework and take a shower and read and get in bed. At which point I collapse into bed in an exhausted pile of goo. Brain function left somewhere around dinner time. I may be ready eleven hours later to maybe contemplate getting up to take the kid to school. Maybe.

Then there are days like yesterday

I got up got the kid to school, even packed her a lunch, came home, RESTED for about an hour, then did some work on the church facebook page, got up moved laundry along, sprayed down the shower with limescale remover and a dash of bleach to the tough area, set the timer for twenty minutes, did some dishes, rinsed shower off when timer went off, RESTED for about twenty minutes or so, ATE lunch, a good balanced lunch, Did the floors, went to church meeting where even though thinking was involved it was two hours of sitting, worked on church facebook page a bit more for twenty minutes, went and got the kid from school, sat in the field while the kids played for a bit, picked up the husband, went to have frozen yogurt, went to target(where i kicked it with cartwheel) and then we went to a friends house where sitting and relaxing and talking happened, then home for dinner shower and bed. I really don’t think I was awake any more at 745. However I put my bedtime at 815 because I responded to a text then.

It was busy, It was productive but there was lots of resting times worked into it. I didn’t feel overworked or burnt for more than ten minutes at any point. I RESTED.

I would love if my days looked more like this. Productive busy but also a lot of self care worked into it.

Of course even that might have been pushing my boundaries a bit as this morning was spent mostly in bed,sleeping, however that could also easily be my med changes because I added prozac yesterday. Hard to tell which.

As a mother it is hard for me to work in self care. To schedule it into my day. It is a must , it needs to happen. Pacing is self care. It really is. I found if I scheduled it, I had less guilt about it. I was sticking to my schedule, nothing was being put off. If you have to …schedule it. Pacing is just as important as remembering to take your medications, get that bloodwork done, go to the doctors.

 If you have to, wake up earlier so that you can get up, get dressed, lay back down. get up take pills, drink coffee, lay back down. Believe me I have done this. I have been there. Days where even just standing up is exhausting.  At one point I was taking my morning medications when my husband had to go to work, at 545 am and then going back to sleep so when the kid got up at 630 I had a chance of actually being able to get up with her.

The more time we take to balance what we are doing with resting , the more productive we are.  It takes time and dedication but you can increase how long you are able to be productive. At one point twenty thirty minutes was my max before I would crash and need to rest for often hours, now I can get away with a fifteen to thirty minute rest most of the time.

Of course for those of us with multiple chronic illnesses there is only so much you can prepare for , however pacing is still just as essential, almost more so. I know I can keep my fibro pretty happy between meds, supplements, pacing and resting.  Degenerative disc tends to like to listen to barometric pressure changes more than me. However if I have been diligent with meeting my fibro needs, the degnerative disc flares are easier to handle and often less intrusive than they could be. All bets are off when IBS flares though, nothing makes that monster happy. I know how to manage it and I know when I am cheating on managing it , I will pay. It has a way of making you pace yourself though, only so much can get done between running to the bathroom.

A lot going on in there

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On the tail edges of my cymbalta withdrawl, I have been completely off of it for four days. I will be starting prozac on monday. All that to say, I have not been able to handle my normal amount of stimulation. I can’t have the tv on while I am on the laptop while also sending texts, while having at least ten tabs open on the laptop. I have been reading more. Sometimes it is my current books that I am reading,yes books as in plural..I have three going right now. Sometimes it is blogs. I have taken the time to go a bit slower. Really digest what each blog I read is saying. You know I have been really big on #Depressedbutdressed in collaboration with It’s not my workout.  For once I have been taking the time to follow embedded links. It is where I stumbled upon One Little Word (http://aliedwards.com/shop/one-little-word-2014). I have been thinking and reading other blogs that have posted their word.

What would my word be?

Sorting through words that describe me, or that I want to focus on, or that I want to be better at, I come across these.

Love

Honesty

Integrity

Courage

Thrive

Inspiring

Starting to break these down into what I could do with them on my own since I can’t pay for the workshop right now, it was interesting to me. Even a little eye opening.

Love being the first one. Without love I am nothing. If I don’t love myself I can’t love others. Love must coat and cover everything I do without smothering at the same time. There is one song that I will always always always sing out at the top of my lungs when it comes on. It is the one that when I am having a bad day, it starts to turn it around. Love is all you need by the Beatles. It is not by coincidence that the very next song on my playlist after that is Eight days a week. I may have a thing for the Beatles huh. I mean those two songs just say it all.

Honesty is the second one I keep close. I love the TV show Bones primarily for Dr. Temperance Brennan. I admire her ability to be honest,even if it is socially painful sometimes. Really we need more of that. Maybe a little less of the ego but, I have to say she has earned her ego. When I was in the midst of teenage years and untreated ADD/OCD I was really horrible at honesty. For me this word still circles around love as well. When you love someone you want to be honest with them. When you start by loving yourself, you tend to be more honest with yourself. Even when it is not pretty.Once you do that, being honest with everyone is a natural next step.

The third one may catch some of the people who know me off guard. I have been told over and over I am so courageous to deal with what I deal with everyday. I am glad I project that. It is not however how I always feel. Most of the time I feel like Piglet. Piglet doesn’t even realize that sometimes just the fact that you keep going is courage. It is something that escapes my notice a lot. Yet again I find that this word ties into the first two. Because I love myself, I can be honest with others when they say I so admire all that you do on a daily basis. I can tell them, thank you it means a lot to hear that because I rarely feel I am doing anything really major. I am again forced to stop and think about what exactly I am doing everyday. What I am doing that they admire.

Thrive has really what the last year almost two years has been about for me. Finding ways to thrive in spite of everything that is going on. Finding happiness during hard times.  I am not letting go of thrive either. It is an ongoing pursuit and goal.

So the last word I came up with is inspiring. I didn’t start my facebook page or this blog for anyone other than me. It was more of an attitude of this is for me and if it helps someone else great. It has been slowly shifting to , I want it to inspire others. I want it to show others that we are not just our illness. I want it to show others that there is no reason you can’t thrive in the life you are living right this very moment.In an odd way this started about me, became about others and is slowly becoming about me again. Becoming about me as others inspire me or ask for advice, I tend to go back inside myself and look at things. I have made progress in areas because others asked for advice and I had to really look at something. Often times it was something I knew I was sort of dealing with but not really. Others have become my inspiration to keep making progress on my own issues.

I don’t really think I could find one word that I would stick to. I will keep thinking about it and I have followed some specific blogs that are participating in one little word. I want to make sure that my ADD does not let this project fizzle out of my head and get lost in the 1,324,4545,4591,342,528 other things that my brain likes to bounce around.

#Depressedbutdressed an on going battle

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Even when the depression is at its least intrusive it is there.

It is always there.

When I am smiling.

When I am doubled over in laughter.

It is there.

No matter what I am doing, anyone with depression is doing, it is the dark cloud that is always there.

Depression is very tricky. It lets you think that you are not depressed. It reels you into feeling safe.

I am not depressed anymore so I don’t need my medications.

I am not depressed anymore so I can lower my medications.

Sometimes it even lets you stop your medication.

That was when it was the easiest for it to strike again for me.

I don’t even second guess anymore that I need an anti-depressant.

It is just a fact that I do.

I also need an anti-anxiety medication.

Not everyone with depression is the same.

Depression is rarely exactly alike in two people.

I have a friend who when hers flares she sleeps and sleeps and sleeps.

When mine is bad, I can’t sleep.

There are areas that people who have depression can relate to.

It makes you feel helpless.

It makes you feel alone.

It makes you feel broken.

Depression is not just sadness. It is so much more than that.

Just like there are different types of people, there are different types of depression.

I was so easily deceived by depression. I was diagnosed with clinical depression. It was not explained properly to me so it got a good hold on me before I realized it. Clinical depression does not just mean a chemical imbalance. So much of what I was feeling is also common in OCD, which is my primary diagnosis.  That constant feeling of impending doom, you don’t know why its there but it is. There is no reason for it to be there. Some people get a feeling of despair. For me it has always been that waiting for the other shoe to drop feeling.

This is why I absolutely loved the hashtag depressedbutdressed. It’s creation was my friend Jen’s brain child. Go check her out (http://www.itsnotmyworkout.com/) Depression has many faces and this hashtag is a way of making people realize that.

I don’t remember to use it everyday. It does not have to be something you hashtag you use everyday. Actually I think if you do it looses its effect.

We need more people showing they did the hardest thing that day. They got up , they got dressed even with depression. They may be depressed but they are dressed and that is the hardest thing for someone with depression.

********** feelings of suicide or suicidal thoughts are a very real aspect of depression. If you are having such thoughts there is hope, There is help. There is a national number that can help you get the help you need. YOU DESERVE THE HELP. Don’t think these thoughts will go away and you will be okay. Pick up the phone and call. CALL NOW! 1-800-273-8255 ************************************

”I’m

The importanance of medication changes

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It is easy to get stuck in a rut. You know something isn’t working like it used to but you don’t know what so you keep on trudging through. The thought of stoping medication is enough to send me into a panic attack. Take some deep breaths, you can do this. I have been through several and though not fun and not always by choice, it was often for the better.

That being said, I am remembering how horrid Cymbalta is to come off of.  I swore when I got off it I would not go back on. It worked so well so I did. I felt I had to. I had to function somehow. What I did not realize was it was not just the cymbalta but the combination of medications I had been on. I did not go back on the others. It was easier to stay on the medication I knew then to go back off and try other medications. At the time I also was not really comfy with the psychiatrist who was prescribing. I had to feel very comfortable to explore different medications, to me this is a very intimate process. It requires me to be more open with the Doctor than I might normally be. I have to be prepared for that mentally as well.

Medication changes for people who are dependent on them is pretty important. There is a little thing called tolerance. Ideally we should be increasing and decreasing and changing up medications, tweaking them. Often though we just stay at the same dose the same medication until it is all not working.  By that time we are often in a flare. It does not really matter what the medication is for, chronic pain, mental health or chronic illness. We build up a tolerance to it.

It is exhausting. I mean EXHAUSTING to go through medication changes. Often we wait. It is not the right time. It is too hard. It will wait. The only thing waiting does is put off the inevitable. It makes it even harder on us. Then comes the frustration because no matter the medication, the change slows us down. There are some things we just can’t handle doing right now.

Then there are the situations we really need to avoid, the ones that are triggers. The ones that push our buttons. We go from fine to OMG GET AWAY FROM ME NOW. For me it tends to be the ones that say prescriptions are not the answer, I just need to do…….. try…… or my personal favorite turn to religion. I tend to not tell the people that are apt to turn to that about the medication changes I am going through.It is the only way I have of coping with that. It is still a work in progress.

I am not telling ANYONE to go off their medications. It is something that needs a doctor supervising. It is not something to attempt or do on your own.  I can not stress this enough.  Research the other medications that are out there, sure that is fine. It is ultimately up to the doctor to decide which ones and which combos are right for you.

Mental health acceptance..a personal choice

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Accepting you have a mental illness is hard. It is really hard. It takes different people different lengths of time.Some never get there. Its a process. Its even scarier when you have a family history of mental illness. Of multiple mental illnesses. It is always looming there. You wonder if it is actually happening or if you are just so afraid of it happening. Family says ” oh we are just a family of worriers. Nothing wrong with that.” There isn’t. Until that’s all you do.  Worry is different from anxiety.  I was even at one point told by a doctor for years.. Mother’s worry. Its what they do. It is not a concern. When worry keeps you up at night, wakes you up at night, interferes with work its a concern. It’s a big concern.

I was lucky. I had a change in insurance.  I was forced to change doctors. I am not sure if I had not changed doctors if I would have made the progress I have made. I am actually pretty sure I wouldn’t have. I would have continued burning myself at all ends and continued to destroy myself. My next doctor did medicate… that is all I did for awhile. I didn’t need help. I had this. It was just a chemical imbalance. I didn’t need counseling.

Then one day I was sweeping my daughters already clean room. I barely had any dirt to sweep into the pan. I remember that day so clearly. My eighteen month old daughter was clapping saying. Clean room. I knew something was wrong. This was not what an almost two year old should be happy about.

I don’t think I made any progress that first year. Not really. Tiny little baby steps.

I made progress. Four years or so in therapy. A lot of talking. Walls came down slowly.

Strangely enough I was not able to do some of the things until my therapist retired. I was suddenly at a loss. I didn’t want to find someone new.  I had  enough therapy. Stuff was still not completely fixed. I burned some bridges I know that. I don’t think for me it could have been done any other way. It was messy. It was quick. While it happened. It was the longest time of my life. Ugly cry does not even touch what happened. I was sure I had just destroyed my life. My daughters life. I had just destroyed my marriage. I was sure of it.

None of those things happened. I have a wonderfully supportive husband who said we will make it work. It will be okay.  My daughters life is not ruined. In fact I think it has been enriched by the experiences we went through. In ways I could never have imagined. Instead of destroying my life I had found my life. Again.

I thought about all this as I talked with a friend about mental illness.  In a lot of ways she gets it. She understands. She has supported me in some of that rough burning bridges patch. In some ways, not so much. They take things personally when its not personal. It astounds her.  They know that they take it personal. I agree with this and I disagree with it. Someone who has been through therapy may know they take it personal. However being able to tell when you are taking it personally and when you are not. THAT. That is much much much harder.

I know I am not the norm. I know I am hyper aware of a lot of my mental health issues. Much more than most people. I talk about it easily, openly. Its just how I work. It is NOT how all people with the same diagnosis as me. It is a very personal choice and it happens at different times for people to be open and honest about mental health issues.  It doesn’t mean it doesn’t blur for me. It doesn’t mean I am always making progress. It doesn’t mean I take a few steps backwards. If I hold myself to be honest then I can say I have done all of those things.  I will probably never stop doing them. I don’t know about accepting that but I am okay with that.  I know when I try to tell myself that I am past that, that is when I get into trouble. Truthful acceptance , its a work in progress.