So....can we talk?

[flutterby]

I didn't want to do another "Heather's depressed" post, but....Heather's depressed. Seriously depressed. And I need support.

I am seeing a therapist, and my doctor put me on another AD today. That makes 3 AD medications: Lexapro 20 mg, Lamictal 100mg, and now Welbutrin 150mg XL (to possibly go up to 300mg - going to see how I react first cause I have reacted poorly to it in the past). I chose Welbutrin, though, because I also need something to help with the fatigue.

So...I guess I'll start from the top. This will probably end up long. Sorry in advance.

We know I have disabling health issues. The fatigue is generally the most incapacitating, although right now it's the pain. Well, and the fatigue but I can't sleep on the steroids. So, I have that going on. I posted about the fiasco at the ER last week. I filed a grievance. It was taken seriously. However, the other ER doctor I saw the next day wanted to put me on a Medrol (steroid) taper. I told him that Medrol was on my allergy list and showed him my bright red "ALLERGY" bracelet. At this point, I had been at a level 10 pain since Wed morning and I had been up for 33 hours. Couldn't sleep because of the pain. He said he wasn't comfortable doing a prednisone taper, which is why he wanted to do Medrol and I cut him off at that point and said very...ummm...firmly that, "Well, I'm not comfortable doing Medrol because it causes me to *dissociate*.

So, his answer was to do 4 days at 60mgs of prednisone and then just stop. I told him I couldn't just stop - that I have to taper. He told me he does it all the time, it's not a problem, and I told him, so have I and it is a problem for me. He still wouldn't write a prescription for anything other than 4 days at 60mg and told me if I couldn't get into my doctor (who at that time had no openings until Tuesday and this was last Thursday) that I would have to come back and get a script for 50mg. I was in a lot of pain, I was exhausted, I had been crying all day and I was not very pleasant and let him know how that was a colossal waste of resources and why our health care costs are so high. I'm sure I was labeled a difficult patient and I really don't care. I still got nothing for pain, as it takes steroids a few days to work, and was at a level 10 until Saturday. I have vicodin 5/500 and it wasn't touching the pain. At all. I wonder how many doctors would tolerate that level of pain with nothing to help for that long, going over 36 hours at a time without sleeping because of the pain. Then they give me the discharge instructions and the nurse is reading them off to me, telling me if I have temperature change in my arm or hand, numbness or tingling to come back. I told her I have those now. I threw away the papers in the exam room.

Friday morning, the pain decided to wrap around my neck into my right shoulder. I drove to my neuropsychologist appointment which just made it worse. I was in the waiting room and the neuropsychologist came out, took one look at me, and before I had a chance to say anything asked me, "Heather, my dear, why did you come today?" Cue more tears. My mom had to pick me up and drive me home, bring back my son to pick up my car, etc, ad nauseum.

I am such a huge burden - physically, emotionally, and financially - on my family. I fell out of the shower again. I have to have help with the simplest tasks (opening a pack of crackers). If easy child and DF didn't cook, I would only be eating sandwiches or crackers. I can't think. My doctor today told me that the Welbutrin will also help with memory and ADD problems and I said to her, "You know when you have a dream, and you have a vague sense of what it was about, but can only catch bits and pieces of it? That's how my memory is - of yesterday, the day before, sometimes even an hour ago." She wanted to make sure I was continuing the neuropsychologist testing. Sigh....

So, difficult child started spiraling mid-January. It got bad. She ended up in psychiatric hospital and I wasn't emotional at all. Everyone else was, but I wasn't. Til now. I got the SSDI denial letter. I called an attorney who tells me that 1) my age is going to be an obstacle because I'm so young, and 2) Ohio is one of the worst states in the country as far as how long it takes to get to the Administrative Hearing. There was an article in the paper a couple weeks ago - 24-30 months average. I currently live on $374 a month. Plus foodstamps.

Wednesday, I started working with therapist on past trauma so all that was opened up. This is why I don't talk about it. If you don't talk about it, it's not a problem. Once you open that box, it just leaves you a mess. Some things should just be left alone.

It's just too much.

I spent all day Thursday and Friday crying - sobbing. Saturday and Sunday just numb and not giving a damn about anything. Numb this morning, crying at the doctor's office, and numb again now. Too numb. Very detached. I think I have some depersonalization going on. Don't care.

Both the neuropsychologist and my GP asked me if I had plans to hurt myself and my response is, "difficult child is only 15." It would be different otherwise.

My prescription list my doctor printed out today that has all of my prescriptions on it shows 28 active prescriptions. About half of them are PRN's and some of those I don't take anymore because they either didn't help or aren't covered by my insurance and too expensive for me.

Today she added Welbutrin, the rest of the steroid taper (I had some left over 10mg steroids so I started the taper on my own), and now Topomax. While she's telling me that CFS and Fibro don't have inflammation, but it's my tenosynovitis and my tendonitis and bursitis that are flaring and those are inflammatory conditions. And I can feel when they are amping up. We still aren't doing anything to keep that at bay instead of waiting until it gets out of control. The nurse asked me why I didn't use my cane today. *smirk* Cause of the tendonitis in my shoulders. I need my arms to drive; I don't need my left leg to drive. Had to trade off.

I'm just not cut out for this. I try to be a strong person, but I fought so freaking hard to overcome depression and I did only to have all of this. Some people can do this and remain resilient and hopeful. Me? I don't care if I live or die.

 

[katya02]

Heather, I care if you live or die. In the midst of your pain and illness on the weekend you found strength to reach out to me. Now I'm reaching out to you. Sending lots of
cyber-hugs and love. I hope your pain is coming under control and that you can get some sleep soon. The pain and lack of sleep are a vicious cycle (you don't need me to tell you that). Please just know - it's important that you are here. You will get through this flare, and you will recover from this depression. {{{{hugs}}}}

 

[tiredmommy]

You're important to me too. I truly hope you get some relief very soon.

 

[DammitJanet]

Well, welcome to my medication merry go round! Sounds like your doctor just read my list and decided to copy it.

I dont think that some of us are resilient and hopeful, at least Im not. Maybe others are. I just cant get up the gumption yet to give up. These disorders or syndromes or whatever they are have taken just about everything from me and I know you feel that way too. Sometimes success is just getting through each day. I asked my therapist in an email just this morning how on earth I could be so damned depressed when Im on so many mood stabilizers and now an AD? She said it was because I had so many situational things going on plus the horrific pain stuff that it wasnt any wonder I was depressed. Gosh knows what I would be like if I was unmedicated! Scary thought...lol.

Heather....you are still in the fairly early days of this stuff. I know it doesnt feel like it but you are. I have dealt with it for almost 20 years now and it does ebb and flow. Sometimes you will feel better than others. You will have times where you almost feel your old self then it comes back. Thats hard too.

Just hang on. Topamax really did make the fibro feel better. I can tell if I forget it right away. Lamictal is great. We shall see about the wellbutrin but I did ok on it before.

 

[everywoman]

Heather---I'm sorry things have spiraled for you. I know how hard you try. I wish I had some advice, some words of wisdom--unfortunately I don't know what to say except that you are loved, and cared about, and that maybe, if you keep on at whatever level you can, things may turn around. I have to have hope---I'm the eternal optimist---annoying I know, but it's who I am and hopefully you can appreciate that. Start by concentrating on the seconds---then move to minutes, then on to 1/2 hours. Don't look to the distant future---just to the next second---Sometimes that's all we can do. Hugs---and all that jazz.

 

[Hound dog]

((((hugs))))

I hope the new medication helps.

When you have a chronic illness it can be awfully hard to feel perky and happy, even if you aren't having pain. Add in pain and in my opinion it takes it to a whole new level.

 

[Wiped Out]

You are very important to me. I'm sorry you are dealing with such health issues and deep depression. Caring hugs being sent your way.

 

[crazymama30]

Heather, you are very very important to me. You have helped me get through some very rough spots, and I would like to do whatever I can. Pm, on here or fb. You are my friend, and I care for you. You are not a burden, you are disabled in a society that places too much value on physical well being.

 

[flutterby]

The thing is, despite lifelong depression, I *am* an optimist. That's probably the main reason I was able to overcome it. I always find the good in any situation. Sometimes it takes me a day or two, but it's always there. I truly believe that things happen for a reason and the way they are supposed to.

But, nothing is changing. And what pushed me over the edge was that I couldn't get into my doctor and I couldn't get treatment for my pain - and was treated like a drug seeker on top of it. I feel/felt like I'm not being listened to, nor taken seriously. I feel the docs don't understand how pervasively this effects my life. How low my level of daily functioning is. What's being done now? It's just bandaids. Yes, I'll get through this flare, but the next one is right around the corner. If it's not pain, it's fatigue; if it's not fatigue, it's months of a fever - or all of the above. I don't ever have good days. I occasionally have a good few hours. Go to the grocery store and that takes care of that then.

It took me 2 years to file for SSDI, because I just *knew* they were going to figure out, start treatment, and I would have my life back. I had my ups and a lot of downs during that time, but I never gave up hope. Til now.

This flare has pushed me too far. No treatment now nor in the foreseeable future. I don't see it ever ending. I am not interested in living another 50 years like this. Right now, I have the responsibility as a parent to be there for my child. After that, I have the right, I believe, to decide what to do with my body - my life. Maybe, hopefully, when that time comes, I'll be feeling better, have some kind of normalcy, or whatever. But, until then? That is the only thing getting me through right now - knowing that in a few years, I can opt out.

I know people care about me. It's not that. It's what I can and can't live with. I'm the one that has to live in this body. But, the waiting and having to live like this until then? ..... Honestly, I think that's where the depression is coming from. You don't live with the kind of depression I had, for as long as I had, with it being as dark as I had and come out of it being afraid of death. You just don't.

And maybe I'll look at this post a month from now and go....wow, I was really f'd up that day. But, this is how I feel right now. And how I've been feeling since Wednesday.

 

[KTMom91]

{{{{{{Heather}}}}}

I love you and I wish I had answers for you.

 

[DammitJanet]

I do understand. Really. People started listening to me more seriously when they asked me point blank if I was suicidal and I said yes and that I had a plan. Just not for that specific day. I'll let them know ... maybe. A bottle of pills and a pint of tequila and my Ipod. What a way to go. I will know when its time because, like you said, the pain will just be too much. By then I expect I wont be able to get in and out of bed without assistance anyway. I have to be careful of what sofa's or chairs I sit on now or someone has to help me up. I cant get out of the tub unless Tony or Cory are there. Not since I just hurt my knees again.

Kiddo...you just gotta hang in there. This is our life. It is what we make of it. If you are in pain...dont let it get you down. Demand to either get to pain management or get that doctor to give you something besides those vicodin. Ask for increased to ...she will make you go up to percecets first them to the pain patch. I really think that will help you because it is round the clock pain control. Either that or oxy's.

 

[Hound dog]

Heather Janet is right. You've got to get that pain managed. It's some of the fatigue. Heck no way can you truly rest when you're in that kind of pain even if you happen to fall asleep even from exhaustion. I know, been there done that.

I think many people with chronic painful conditions have their "line in the sand". I know I have mine, and have had for years. (I told you I've got a plan for everything lol) And yeah, often just knowing you've got that option is enough to keep you going even though it sounds strange to most people. My kids kept me going for many years. And now I have school that is keeping me going because I'd want very badly to reach that goal I made for myself. Will there be another goal? Who knows. I stopped thinking long term many years ago.

For me short term goals help. If I look too far down the road it's just too overwhelming to take. Depending on how bad it is, those short term goals can be hours, days, months or maybe a year or so. Right now I'm doing daily ones because I'm not doing so hot. And each day I think "well I made it again" and I look to the next one.

But I do think if you could at least get the pain managed, your overall outlook would improve. mother in law was more than ready to die just a few months ago. So much so that honestly I was surprised she just didn't take too many medications. Since the pain patches and pain medications to help with the breakthrough pain.........OMG you wouldn't believe the change! She still has trouble, and she even has days where she hurts a bit more.....but overall........I think she'll live to be 100. She's happy for the first time in many years.

I'd dig my heels in with the doctor. And I know you really like her, but I'd be looking for another opinion if she can't/won't at least do this much for you. Pain can and should be managed.

((((hugs)))))

 

[flutterby]

I *finally* (only took me 5 months) have an appointment with a pain doctor on May 3. Most days, though, it's the fatigue that is the worse. I'm hardly awake, when I am I have zero energy and feel physically ill from being so tired, can't think, etc.

Janet, what dose of topamax are you on?

 

[tiredmommy]

Ladies- I just need to say that you all need to make sure your respective medical teams are aware when your days are so low that you could consider suicide due to your health and pain concerns. ***I*** don't want to lose any of you. And Heather, I hope the pain specialist can help. My pain is only a drop in the bucket compared to many with chronic health issues in this community and it absolutely exhausts me. Hopefully the pain control will allow you meaningful rest which will make your life bearable again. {{{Hugs}}}.

 

[1 Day At a Time]

Heather,

I am sending you gentle hugs. I hear you, and I know that you are completely frustrated with your body, your pain, and the seeming indifference of the medical community. I think that the move to a pain doctor is a very good one. The most important thing is to get you sleeping, and I do believe that the pain doctor can help with that. Lack of sleep can make you depressed and intensify your pain - but I know that you know that all too well.

You are in my prayers and I want to suggest that you just place one foot in front of the other right now. That's enough until you can get some real pain relief and some good restful sleep.

Valerie

 

[busywend]

I am sorry you are so low and in so much pain with zero energy. I can not even begin to imagine it.
I hope the docs will listen and get you true help for these issues. May can not come fast enough.

HUGS!

 

[Marguerite]

Heather, others have said that getting the pain under control should be the main priority, because the fatigue will improve once you do this.

I endorse that, from my own experience. At the moment husband's pain is not well controlled and he's not functioning as well as he should. He said to tell you - it's affecting his sleep badly, and he is aware of this.

It's good you're finally seeing the pain specialist. Now, considering how brain-fogged you are (and whether it's primarily from the pain or not, doesn't matter - you are foggy) then you need to begin planning NOW for that first pain specialist appointment.

So to make it easy, I'll put this as a to do list for you.

1) Take a copy of your medication list and use a highlighter pen to indicate what you currently take, and what you only take now and then.

2) Make a list of the problem symptoms, in order of how much they impair you. Put the worst at the top.

3) Have a separate list of allergies and sensitivities, including what happens with each one. For example you mentioned Medrol is on your allergy list because it causes you to dissociate - but tat isn't an allergy reaction, not strictly. If you call it that, it confuses the doctor and can lead to dangerous misunderstandings. If you're going to talk doctor-speak to doctors, you HAVE to get it right. Otherwise - you have to define your own terms and be consistent. So the best way to handle this - make that list, and after each medication that is a problem for you, list what it does to make it a problem.

4) If you can, write a summarised medical history. Try to keep it to less than a page.

Take all of these as copies you can leave with the doctor.

Now to your expectations and attitude to health care - I'm probably already preaching to the converted, but I need to emphasise - don't expect instant miracles from any doctor. YOU have to be the person in charge of your own health care, the doctors are your employees. Highly skilled employees, but nevertheless - they are there to help you in your need to be in charge of your own health management. You make the decisions, based on their expert advice.
Some patients are constantly searching for the "magic bullet" which can cure their problems. But such things don't really exist. The best you can get, is something that can reduce some of the problem. But underneath it all, YOU have to find better ways or alternative ways to do what you need to do, in simply living your life. Don't put your life on hold while you wait to get well; instead, live your life to the best of your ability, DESPITE the pain. At the moment I agree, that seems untenable. I'm not saying get out there and kick up your heels. Just get out there and do what you can, and let go the rest. The day ill come when you can do more. In between there will be days when you have to do less. But it's OK. You're not alone. As long as you LIVE, and don't let yourself stagnate.

If we get a cold, we go to bed and rest (at least a little). But after a certain point when you have a chronic illness or chronic pain, we have to get up off that bed and take back control of our lives again. Resting is no longer doing a darn thing to help.

This next phase of learning to cope is emotionally painful, as well as physically challenging. But there are easier ways of doing the same tasks and you will learn these, you will find your own mind will help you find cute tricks around the problems.

To give you a hand for now, to help tide you over until your appointment with the pain specialist, I have some tips for you.

1) If opening packets is a problem, have a pair of kitchen scissors handy. I gave up tearing packets open long ago. We also have various jar openers (including those non-slip matting things). There are lots of fun and lovely gadgets to help. Even putting an elastic band around the lid of a jar, or using washing up gloves, can help you open jars.

2) Pain is your current HUGE problem, so try my holiday hot pack. We were taught this trick by a doctor I saw after a fall while we were on holiday.
To make your holiday hot pack, first get a hand towel. Wet it thoroughly. Wring it out. Fold it neatly so it is the right size and shape. Then put it inside a plastic shopping bag (the crinkly kind of plastic, not the more expensive plastic - you want the freezer bag kind) and microwave the lot until it's hot. Apply it where you need it. As it cools, microwave it again. I find it takes less than a minute to get the whole thing hot enough the first time. Less time on reheat.
Do not underestimate the benefit you can get from heat.

3) Pillows can help a lot when trying to get comfortable in bed. I've got a number of gadgets that help - small cushions filled with mini-beads (like mini bean bags) which are flexible and soft, make great padding. I tuck one under my arm at the moment, because if my arm falls too close to my side then my arm begins to ache abominably and it wakes me up. I also have a couple of soft toy rabbits (very cute) which I bought for Easter a few years ago. They are a convenient wedge shape and although it LOOKs like I'm cuddling a toy bunny, I'm actually using more as cushions.
And finally, I have a partly inflated ball from the physiotherapist, like a mini basketball, partly deflated. I actually put that under my right shoulderblade, it helps me lie partly on my left side, since my right side is too painful.
OK, this is what I worked out for me. Other tricks -lie on your side by put a pillow behind your back, another one in front of you (so your arm that is on top doesn't fall across you at too steep an angle, and lead to nerve tingling) and also another pillow between your knees (works for hip pain). Somewhere I also have a full-length body pillow.

My head goes on a down pillow which my neurologist suggested I get. It's not that great, but it helps to a certain extent.

YOu will have your own tricks that help you, your own places to put pillows. But it really can help you get sleep a bit more efficiently.

it's not a cure. But anything that can improve your condition, even a little, or for only a short while, has to be a bonus.

As for actual pain pills - I graduated to morphine in 1996, I think it was. But I don't recommend you jump in the deep end with it. I was started on too high a dose, I realise now. If the pain pills sedate you or you feel -high' then chances are, you're taking more than you need. I aim to always have a little bit of pain tapping me on the shoulder, so I can maintain an awareness of where the problems are. But the full amount of pain - I don't function. The morphine helps a lot, plus a certain amount of paracetamol. If only I could take anti-inflammatories! They helped a lot, before my stomach began violently rejecting them.

Hang in there. It's nasty, but it does stabilise and you do learn ways to manage it better.

Marg

 

[DammitJanet]

Heather....my dose of topamax is really high. You really have to start low and go slow with this drug. I would imagine and would hope that your doctor starts you out at no more than 25 mgs and then works you up on a schedule of 25 for a month then 25 morning and night for another month, then 25 in morning and 50 at night for 2 weeks and then 50 in morning and 50 at night for another 2 weeks and see where you are there.

At that point you will be at 1/6th of my dose! I take 600 mgs of topamax.

Oh, and about the allergy to medrol thing...I was told the same thing Marg said when I told the pharmacy about steroids and me. Not a true allergy but they would notate my file so that if a script came in and was a steroid and I didnt realize it, they would know not to fill it without talking to me before hand.

 

[flutterby]

The only medication I am truly allergic to is Plavix. But, every time I try to tell them about the medications that I have an adverse reaction to, they just cut me off and stick it in the allergy list. So, I save my breath now.

My doctor is starting me on 25mg for a week, then 25mg twice a day for a week, then 25mg in the AM and 50mg in the PM for a week, then 50mg twice a day. However, we did talk about me slowing the titrate down if I need to. So, if I feel I need more time to adjust the medication, I'll listen to my body and adjust accordingly. I won't be starting it until I'm done with the prednisone taper, so it will be about 2 weeks before I start it.

 

[DaisyFace]

Heather -

It angers me that your docs are not "hearing" you. You are speaking loudly and clearly and yet they refuse to hear.

You are probably correct when you assume that they have "Difficult Patient" noted in your chart. And such a notation may cause them to not take you seriously. Arrgghhh!!! I'd like to smack them!

I am hoping that your new pain doctor will listen. And after he listens, he will be able to help, And after he helps, he will tell those other docs where they can get off...

Meanwhile, WE are always happy to listen. We love you. And we will always be available to you.