Yet Another Thing…

Hello blog world. How goes your battle? We truly are warriors aren’t we?! I admire everyone waging war with autoimmune diseases. They’re vicious, relentless, ambushing, painful, annoying diseases that too few understand including the medical world.

Anyone else in on hating the autoimmune diseases club?!

I have a new development as of last week which is now forcing me to see yet another specialist. So presently, I’m booked in or being booked in with 4 different specialists. Yes that sucks but, what sucks worse is three of them are a 10 hour round trip drive away. You heard that right. That’s not only impossible for me, but since Mr. CrankyPants has to take off work every time to drive me, it’s impossible for him too.

I’m presently trying to get out of one appointment that I believe is completely unnecessary. If I thought for any reason at all that it was necessary I wouldn’t be trying to get out of it. Right now as far as I know, I’ve managed to talk them into a teleconference appointment in my own city instead since they’re not letting me away with cancelling. That’s the Nephrologist.

I’m in process of trying to get the other two out of town appointments covered in one day since they’re both in the same building. If I can do that, it means only one trip rather then three.

I know you’re still wondering what the latest development is. I guess I shouldn’t keep you waiting any longer should I?! Well just for a min.

The appointment that is in town already hasn’t been made yet but that’s with the GI regarding my gut. I’ve heard she’s amazing and the kind of Dr. everyone wishes they had so I asked to see her and I’m grateful for the referral to her. I don’t know how long the wait will be.

The other two are the Rheumy and drum roll please…I’m now being booked to see a neurologist.

I have developed a tremor. The Rheumy is concerned and wants me to see the neuro.

I’m grateful to be referred to the neuro as I have other neuro stuff going on aside from this new tremor but, my heart sank when I found out that yet again it was going to be out of town. Geeze we need specialists up here.

If I was doing things the Dr.’s way, I would be making three 10 hour round trip drives in two months to see these docs. Who can afford that financially or health wise?! It’s ridiculous. I hate our medical system and it’s making me a CrankyPants.

Do they not get that we are sick people?! I’m so weary.

I don’t know if I mentioned prior that I’m looking into reporting a Dr. here for a serious situation? The College of Physicians think I need to. If I have already, just an update. I haven’t decided yet whether I want put myself through the stress of it only for the College of Physicians to do very little to nothing anyway. Sad that Dr.’s are so protected but patients aren’t.

Anyway, I’m worried about this new tremor thing too. I hope that I can get some answers. I hope even more that it’s nothing to worry about. While I’m there, I’ll take the opportunity to tell the Dr. about my really bad memory and my struggle to get words out and form sentences that started when I was on methotrexate. I’d really like to get an MRI and maybe a brain scan so I know if anything worrisome is going on.

Or if I have a brain at all. 😉

One more thing. I grabbed the opportunity to ask the Rheumie while I had her on the phone, for an ultrasound on my foot since it’s become so painful I can’t walk on it. Rather my big toe joints. She complied and I’m happy about that because I can’t get my GP to do anything. The bummer is, it’s a 6 month wait for an ultrasound. Grrr…I’ll get myself on the cancellation list I guess.

How are you all doing in your battles? I’d love to hear from you.

Hot Days & Rain Coming,

CrankyPants

P.S. Sorry I’m so Cranky today. I’m overwhelmed and just wish all this would go away.

27 thoughts on “Yet Another Thing…

  1. Darn, Cranky, you have a lot to be cranky about. A tremor, eh? We get those all the time out here in California. Hopefully it’s nothing serious. Who knows, maybe it’s just a bad reaction to all those crazy drugs you have to take.

    I can’t believe you have to wait 6 months for an ultrasound. That’s just messed up. In the meantime you have to put up with a bad foot. Between hopping around on one foot, and having a tremor, maybe you’ll invent a new dance.

    Autoimmune diseases really do suck. I hate ’em. I hope all goes well with all your appointments.

    Liked by 1 person

    1. Thank you Tippy! Bahaha a new dance. Shall I add my epilepsy into that dance? I’d really be rockin then. It is bat shit crazy to have to wait 6 months for a stupid ultrasound. I’m with you, I hate these diseases too.

      Liked by 1 person

  2. Dang Cranky, you have been through a lot!!! I am so sorry for all the struggles and I know it is frustrating. Having SO many questions, but NO answers can make anyone super cranky!!! I do believe that the healthcare system has gotten SO bad and seems to just continue on a downward out of control spiral. We should not have to fight so hard to protect our health as the system should want that for us and help us get there. I am thinking there might be a stupid epidemic and it is spreading like wild fire through the largest forest. As frustrating as it may be, we all need to stand up to the doctors that are not helping and never give up! I wish you wellness, comfort and the answers you deserve!!!

    Liked by 1 person

    1. Thank you Alyssa. I do wish the medical world cared like they used too. It’s sad that so many have to battle the docs when we’re already battling scary diseases. It’s definitely an epidemic. How are you doing?

      Liked by 1 person

      1. You are welcome!! I really do not know what happened to the empathy the medical world “use” to have. It seems to have just disappeared into the darkness at some point.
        I am hanging in there, just fighting constantly with pain and stress, what a horrible combination!

        Liked by 1 person

      2. I think it became about money more sadly. Sorry you’re battling pain and stress it is a vicious cycle and I totally get it. I can’t remember, are you able to take pain killers?

        Liked by 1 person

      3. It is without a doubt all about the money for the doctors and the corrupt pharmaceutical companies. It is crazy what a vicious cycle pain and stress can be! I stress about the never ending pain, which makes the pain worse. Yes, I am able to take pain killers and boy that was an ordeal!!

        Liked by 1 person

      4. Oh man the pharmaceutical companies. Don’t get me started. lol I totally understand the cycle of pain and stress. I’m so glad you have pain killer. Sorry about the I’m sure horrible battle to get on them.
        That’s one place I thankfully didn’t have a battle but if I move to a new province which is the plan I’m not sure if I may then. For now I’m grateful I haven’t had the battle. It’s like Dr.’s are supposed to help us but all they do really is cause more stress.

        Liked by 1 person

      5. The pharmaceutical companies are SO terrible and they seem to own the doctors now! My doctor told me that I needed to get my anxiety medication from a psych doctor, but then when I did it was not good enough! He told me that I needed to choose between the anxiety medicine and pain medicine, which is horrible! I did pitch a fit and gave up the anxiety medicine against what I thought was right! YES, the doctors that are supposed to help us only create more issues and A LOT more unneeded stress!!

        Liked by 1 person

      6. Really cbd for anxiety? I have thought so much about trying cbd, but I do not know where to get it from and have it not be fake crap! I think the pharma companies are horrible and have no compassion for anyone, as long as their bank accounts are still HIGH!

        Liked by 1 person

      7. Unfortunately, medical marijuana is not legal where I live and I think it will be among the last states if ever to legalize it. The south is a pretty twisted area to live in! It is now legal in more than half of the states, but the south lives on such messed up ideas and lies!

        Liked by 1 person

      8. YES!!!!!!! Okay what I am about to say would probably make many people mad, so you can delete it. These people are in the strip clubs Friday and Saturday, but go to church on Sunday and think all is fine!!

        Liked by 1 person

  3. Jeeees that’s a lot going on, and the travel made my eyes water. I thought I had it bad with my small bits of travel to specialists or for surgery but 10 hour round trips are something else entirely!! I do wonder with some of these appointments whether an initial consultation would be better off being on the telephone, so they can chat about the issues and arrange whatever tests they want done first. Half the time the first meeting seems lacklustre because they just want tests and can’t do anything until those have been done. I really do hope the tremor is ‘one of those things’, something that will go again as strangely as it arrived. But I definitely think a neurologist to look into this is the best idea, so I’m glad you’ve been referred. In the mean time, I’ll keep my fingers crossed you get an apt for an ultrasound on the cancellation list asap as 6 months is too long a wait when your foot is so painful!

    As for the Dr you’re considering whether to report, I can see the hesitation; I’m undergoing something myself at the moment having reported a surgeon, and it’s a long slog of a journey, but I felt it necessary for future patients. I guess it’s weighing up the risk (to future patients), the damage caused or potential damage, and what the process is to report this Dr and whether you’re in the position to do it without putting to much extra stress on yourself.

    You really do have a lot going on, so try to take a deep breath and break it down into more manageable chunks. You’ve got this. Sending hugs your way ♥♥

    Caz xx

    Liked by 1 person

    1. Thank you so much. Boy do I wish I could avoid some of these appointments. Rheumie insists she has to see my joints every three or so months to determine whether the Humira I’m on is helping enough. The Neph well that’s just a follow up from a year ago that I totally don’t think at this point I need.. They’re saying the College of physicians requires docs to follow up. Funny how they care about that more then how patients are being treated. I’m so so sorry you’re going through something with reporting the Dr. It’s so hard on the patient which it shouldn’t be. I agree one of my battles is what if he’s still up to no good, and I could at least get a mark on his record so they can watch. Or what if there’s other’s like myself if one person spoke up, other’s might find the courage. There’s also concern of being black listed where there are already so few docs up here. Can I ask how long you’ve been in the process? They were telling me it would take up to a year. We are planning to move out of province when our house sells and I would have to possibly come back for a hearing at some point. They would be but still the travel again.
      Thank you so much for the reminder to break things down into small chunks. It sure helps if I can remember to do that!!
      Fingers crossed to getting that ultrasound sooner!!
      How are you doing/feeling?

      Liked by 1 person

      1. The cynic in me would say the regular follow-up contributes to the research and drug promotion to have those stats recorded. The lenient part of me says ‘they care about the patients’.
        With reporting the doc, it’s probably different here and in my case but I spoke with the hospital first (pretty quick turnaround) then reported to the medical governing body in the UK (maybe 4 months or so for resolution, aka. them saying they don’t feel the need to do anything) then legal proceedings but that can take a very long time. I would imagine that in your case you could report to a health governing body and leave it in their ‘hopefully’ capable hands. I do think it’s a case of wondering whether you’d regret not doing it, and it’s true in saying that if one speaks up another may feel more courageous to, or it could change the future for other patients who won’t have the same experiences you did as a result of you coming forward. Of course, it doesn’t mean that because you report something that someone will do something, but all you can do is try. It really is up to you and how you feel about it, factored with whether it’s something you can reasonably take on right now. Is there some kind of charity there that could advise you about reporting this doctor, to give you an idea of the route and what it would involve? Knowing more about that may help you make a decision that’s right for you. xx

        Liked by 1 person

      2. I talked to an advocate at the College of Physicians here. She’s the one who advised me to report it and would be a help to me if I do. It’s serious enough that there could be a hearing and if there is, I’d have to be at it. If I’m moved by then as it can take up to a year, then I’d have to come back for it. They would pay for my trip. Righting now I’m still debating what I”m going to do. I need to get copies of all my medical records in the meantime. Not for them, but for myself. I also need to figure out the date of the incident. My medical records would tell me that. It’s a tough one. If there wasn’t a possible hearing and it was left to them, after I report I wouldn’t have such a hard time deciding. Sorry again that you’ve had to go through it.

        Liked by 1 person

  4. I’ve got a tremor too, started a few years back. Neuros insist it is benign. Sometimes its bad enough that it interferes with me grasping things and makes me drop things. I think Neuros classify all tremors as benign. My son (15) also has one that is fairly severe. They insist it is benign also. I don’t think they really know. It’s annoying. Good to hear from you.

    Liked by 1 person

      1. I’ve had multiple MRI’s. My son hasn’t had any. They call it Benign Essential Tremor. I think it is just another garbage can diagnosis for “we don’t know”.

        Liked by 1 person

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