Friday, March 16, 2012

Feeling lost

Wednesday Dh had another doctor's appointment to follow up on the pain med he had been trying the past 2 weeks. It worked awesome the first 2 1/2 days and then he was right back pain, if not more pain. We were supposed to wait until today to go in to the doctor to follow up about it, but since it wasn't working I got him in Wednesday morning. The doctor is at a complete loss what to do now, so we are back to being referred to the Neurology Clinic at our state university hospital.  We've been that route, 8 years ago, with no results.  But, this time Dh is willing to try medicines to help, so I guess that is our main reason we will be going there - for pain management.  I think the thought of having to make trips there again and deal with this big clinical setting is depressing Dh even more. I don't even want to go up there - the drive is terrible and takes 90 minutes each way.  I think we are both just remembering how stressed we both were when having to go there 8 years ago and neither of us are excited about doing it all again.  In fact it's just giving me a big old stomach ache and wouldn't surprise me if it's causing Dh to be more in pain because he's stressing about it too.  He's never been able to get a definitive diagnosis, but his symptoms are similar to MS - he just never tested positive for it 10 years ago, when this all started.

His doctor told him to stop taking the pain med he was trying (low dose of morphine twice a day) since it didn't seem to be helping. Well, since stopping it Wednesday he has felt even worse pain - constant all over his body.  We have no idea how long it will take to get an appointment at the University - they are supposed to call us for an appointment and nothing yet. I have a message into Dh's doctor to ask him if maybe he should just continue on with the morphine until he can be seen at the University, as it must have been helping a little bit.  It could be a month before we get in to see the "experts".

I wish I knew what to do for him.  He gets upset and says "well, it must all just be in my head".  He spent most of yesterday sleeping because he doesn't know how else do deal with the pain.  We're all getting to the point that we don't even want to tell him about anything (like Ds having that job interview and the low salary deal) because he just gets all bent out of shape about the littlest things.  I get frustrated that he can't even seem to handle anything related to his own life. He can't make a doctor appointment, he can't go to his appointments by himself (a 2 mile drive), he can't contact his doctor himself if he has a question, he can't take care of talking to the University Neurology to find out when then will schedule him in. I have to do it all and it's not like he's incapable of doing it. I even had to be the one to deal with our recent water crisis, where in the past he would've dealt with it. He won't take charge of his own diet or even when to take his various pills. I finally got one of those pill boxes with morning, noon, night, bedtime boxes for a weeks worth and yet I still have to constantly remind him to take them. The box is out in plain sight on the counter and he will forget to take and then it's my fault because I didn't remind him. If I am not home he seems to remember ok, but when I am home it suddenly becomes my responsibility. He can talk, think, even drive but he will take no responsibility for any of this and trying to get him to just makes the situation worse. It ends up being easier to just do it myself.  I'm just feeling sorry for myself today...


  1. I'm so sorry your Dh is suffering like that! My Mom has a medical condition that nobody can diagnose, hence lack of treatment too. I know how frustrating it can be! Hope, they will be able to find the right medicine for him this time.

  2. I feel as though I'm adding gasoline to the fire here but I feel bad for you so I'm going to jump in and hope that what I say will be taken in the right spirit.

    Your hubby sounds very depressed. His pain seems to be systemic which means that whatever is causing it is attacking him everywhere at once. Believe it or not, GLUTEN is a bitch for those (many) people who are intolerant. It causes all sorts of health and immunity problems. If your hubby is showing signs of MS, which is an autoimmune disease, it could be quite simply that he is allergic to the protein known as gluten. Gluten is found in wheat, barley and rye and is added in powder form to MANY processed foods and stuff bought off the shelf. If your hubby really wants to help himself and try just about anything to get well, he MUST change his diet to certain fruits, vegetables, legumes and nuts only. Everything he eats must be gluten free. This is just a start, of course, and it's also a shot in the dark because by no means am I a medical professional but, man, if I was in pain like that I would try anything to be rid of it. There's a wealth of info about gluten on the net.

    We are made clueless by corporations pushing their 'crappy' food at us and I get mad because of what I and the spouse both did to ourselves because of 'food' but let me tell you that our health has improved tremendously soley because we made the choice not to eat it anymore. It's difficult to change, I get that, but your hubby's life is on the line by the sounds of it. I really do wish you the best of luck in getting him to try ANYTHING to get well.

  3. I am feeling similarly lost as the daughter has been having health issues going back over a year. It's been very stressful dealing with them(and them not being diagnosed correctly still), especially with her living away at school almost 4 hour's drive away. This is part of the reason why she is coming home for good after she finishes up her year at school.
    But enough of me and my crap.

    I agree he is acting depressed and giving up all responsibilities up to you. Can you put it into the light of "this is a fresh try at finding the cause why you are sick" with the trip back to the Neurology Clinic rather than letting him think of it as a "this didn't work before, it won't work now" mindset. Perhaps new doctors are there now, new discoveries, new treatments that weren't there 8 yrs. ago?
    I am thinking biofeedback might be a solution? Has that been explored? Many people with forms of chronic pain(if the condition causing the pain can't be 'cured')use biofeedback to manage pain when drugs can't. Just a thought.
    And acupuncture....or chiropractic? If I was in that sort of chronic pain I'd be looking outside the conventional medical community even for relief. It wouldn't hurt to look and see what's out there and cost/coverage.

    And The Quest has a good thought too on the diet. Seems you hear more and more about how what you put into your body in the way of nutrition affects our health or lack thereof.
    I've read and seen some amazing things happen to people by turning what they ingest on their heads. It's worth a shot to explore.

    Good thoughts here that y'all find some answers and you get some relief too.

  4. Your husband is severely depressed. This is probably brought on by chronic pain. But you must take care of you. I have lives for 33 years with a man that will not even flush a toilet and then blames me when the house stinks. It can be very frustrating. But I have grown a thick skin and I would do nothing for him. Ignore him. He won't die. I am sure he is in pain, but I am in pain every day and I still teach and work. Sometimes I am depressed and just want to give up but no one will do it for me. I am sorry you are having a bad time.

  5. I have been making suggestions to him for years but they just fall on deaf ears. I recently suggested that maybe it's gluten (an in-law relative his been having muscle problems and they think it might be gluten). He wasn't even willing to try to cut it out of his diet to see if he felt better. I have suggested seeing alternative medicine type of doctors. I told him about a co-worker who takes her mom to a guy who is helping. Two days ago I suggested he should try a really healthy diet for 30 days. His mindset is his health has been taken away from him, he's not going to give up the foods he loves too. Huh? If I felt like him I'd be trying everything under the sun to see if it helped. I remember about 8 yrs ago or so (when he wouldn't even take medicine the doctors wanted him to try) his mom finally telling him, if he's not going to take medicine or try other avenues then he just needs to stop complaining! But, he didn't really have much pain back then, just weakness and fatigue in his muscles. When the pain hit last summner on a pretty constant basis he did finally agree to get back to seeing a doctor and has been willing to try the different things, nothing is working enough.

    It didn't help when I got a hold of the Neurology clinic and it will be 8 weeks before they can get him in! His doctor did refill the morphine as it was better than not being on it, so now I guess we just wait 8 weeks :(