Happy Birthday Grandma!

grandma

Today is my Grandma’s birthday. Happy birthday, Gram! I hope you have a wonderful day!

My Grandma is one of my favorite people in the world and I love her very much.

My Grandma was incredibly, wonderfully supportive through my journey through fluoroquinolone toxicity. As soon as I said, “I’m sick,” before I even knew why or how I was sick, she took me seriously. When I realized what was making me sick, she never questioned me. She never downplayed or dismissed my experience with fluoroquinolone toxicity–she just believed me. She was always on my side, and it didn’t seem like it ever occurred to her to believe the medical establishment, or anyone else, over me.

When she broke her hip a few years after I got floxed, my Grandma immediately put Cipro on her list of medications that she was not to be given. She knew that it was dangerous because of what I had gone through, and she didn’t want what happened to me to happen to her. Her refusal to take Cipro meant a lot to me. It signified that she believed me, and that she didn’t believe that my reaction was something rare or dismissible. It meant that she listened. I write about my experience with fluoroquinolone toxicity not to relive what happened, or to wallow in it, but to warn people so that they don’t go through the same thing I did. It means a lot when people listen, and it meant a lot to me that my Grandma listened to me, and that she refused to take the drug that hurt me. I’ve never had to fight with a doctor about a fluoroquinolone prescription for a loved one, but, I’m pretty sure that if I did get into an argument with a doctor about whether or not a fluoroquinolone prescription was appropriate for my Grandma, she would take my side.

I am lucky in that I have a lot of wonderfully supportive people in my life. I always felt like everyone in my family loved me and wanted what was best for me. I have always known that I am loved and cherished. I have always known that all of my loved ones were on my side. They are all appreciated!

Not all “floxies” have supportive loved ones. Some people don’t believe that their floxed loved one is really sick. Some people don’t try to understand what their floxed loved one is going through. Some people have family members who are dismissive of fluoroquinolone toxicity, and who don’t believe that it’s “real.” Some people have family members who believe that fluoroquinolones can’t be dangerous, and that adverse reactions can’t be devastating, even though there is plenty of documented evidence that fluoroquinolones ARE dangerous and adverse reactions ARE devastating. It saddens me when I hear of people who are not supported by their loved ones as they go through the difficulty of fluoroquinolone toxicity.

I appreciate the support of all my family members, and, today, on my Grandma’s birthday, I am especially appreciative of her.

You are loved, Gram. Happy Birthday! xoxo

 

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14 thoughts on “Happy Birthday Grandma!

  1. L March 3, 2017 at 1:45 pm Reply

    Happy Birthday! So glad you have her in your life!

  2. Barbara Arnold March 3, 2017 at 10:47 pm Reply

    What a lovely lady. You are so lucky Lisa. Your post brought a lump to my throat. I know if I didn’t have to fight so many battles with Doctors, family, friends, my recovery would probably be much quicker.Only the other day a Doctor said to me ” this doesn’t happen to everyone” I wanted to punch him, and I felt really angry the rest of the day, to the point I just screamed when alone in my car. Even, people who are close to me, seem to think they know what I’m feeling, instead of simply just listening. To actually “be heard” goes such a long way. Oh for some one like your grandma. Trouble is I’m a grandma myself.
    I realize my anger serves no purpose apart from making me feel worse, and causes me to argue with some that I care about,but I really don’t know what to do about it. It’s inside me, controlling me, urging me on. It’s like a possesion, once I start I can’t seem to stop, even though the rational part of me knows what I’m doing and is trying to stop me from kicking off again.
    Maybe one day I will find myself again, I can see her in the distance waiting for me to return.
    Love and healing to you all.
    And a happy belated birthday to your lovely Grandma xx

    • Madge hirsch March 4, 2017 at 12:53 pm Reply

      Hi Barbara – I know how you feel about the anger. I am still angry about the bitch gastro consultant at the hospital who though removing the Cipro drip bag did not tell me why ,who then did not report my reaction to my GP , who lied to me on the phone telling me that it was a painkiller in the drip bag not another antibiotic and finished off by falsifying my dossier to say I had been given Augmentin as well as Flagyl . As if I was such a fool that I dont know that Augmentin begins with Au not Ci. Or maybe she thought that my GP would value colleague solidarity above honesty and not tell me that the Cipro / Flagyl combo was the first line treatment for diverticulitis here and he was 100% certain I was given that. Months later I found out from a former pupil who I had not seen for years that this doctor is the daughter of the director of the clinic. That made me even angrier as I concluded she thinks she can do what she likes and get away with it. And she has because I don’t have the emotional energy to pursue it.
      But we have to try and let the anger go because in the end it is not contributing to our recovery. It adds to our stress and that makes our physical symptoms worse. If there is some useful channel for our anger that will help stop this from happening to others that can be positive but our anger can never turn back the clock to our prefloxed state. I try to warn those around me not to take this poison but I often think it goes in one ear and out the other but at least I’ve tried!
      Have you had the results of your thyroid tests yet?

      • L March 4, 2017 at 1:25 pm Reply

        Although I am not one to be litigious, I think in these instances it is the best thing to do. IF enough doctors get sued, maybe they will remove their heads from their butts and finally LEARN something.

        • Madge hirsch March 5, 2017 at 3:07 am

          Unfortunately it is probably harder to sue here in France than America. I could not stand the stress and the prospect of losing our money in a fruitless quest. Part of the problem is that when I was in the clinic I did not recognise the name on the Cipro bag and only remember it began with Ci, unlike the Flagyl which I had had before when I was young for a sexual infection. After I had the reaction of neuropathy and tachy they took the bag away ( or rather they did not replace it when it was finished ) . When I asked why I no longer had 2 bags on the drip stand they said I did not need the other one anymore and I did not connect the removal with the reaction especially as with continuing Flagyl I did not feel that great anyway. When 10 months later my GP prescribed Cipro for a suspected UTI ( which the urine analysis later showed I did not have and which I thought was a return of my diverticulitis !) I had within 2 hours of taking the first pill a visual reaction ( like feeling a disconnect between my eyes and brain) that I recognised from the clinic experience and it was only then that the penny dropped that this was what was in the other drip bag . I looked it up online and was horrified and stopped taking it . I decided to phone the gastro consultant to get confirmation and was able to speak to her a week later. But I phrased my questions ineptly giving her leeway to lie to me. She must have known I had either been exposed to Cipro again or was having a delayed reaction . The day after the phone call I was hospitalised ( not at the same clinic ) for atrial fibrillation but the hospital cardiologist dismissed any notion it could have anything to do with the Cipro I had taken one week before.
          When I finally got a copy of my dossier from the clinic she had written on my treatment record that I had been given Augmentin not Cipro. The ECG that they had done before removing the Cipro bag showed a heart rate over 100 ( hardly normal for a person lying in bed) and that there was an abnormal rhythm ( but not afib) and my GP later looked at it and said it showed some deviation of electrical pathways in the heart that he assured me were not present in my other normal ECGs . BUT my own cardiologist had said it was normal when I showed him just as the clinic one had so there would be no mileage there.
          It would be just my word against hers and I have no illusions about who would win. Medical litigation takes years here.

        • Madge hirsch March 7, 2017 at 10:29 am

          Thanks L . They look a good idea. I used to take an old-fashioned hard briefcase ( like a miniature suitcase) which helped but the main problem is that I have a bad back plus very short thighs so if I sit well back in the seat so as to not slump and use my lumbar cushion correctly my legs do not fold over the front of the seat comfortably. I find nearly all seats uncomfortable. I have a kneeling seat at the dining table and take it to friends if invited out and my most comfortable mode of travel is the motor bike . I had the passenger part of the seat customised so as to make it a similar position to the kneeling seat. But I hate flying anyway- I’m just not comfortable with the notion of being stuck in this tin box up there! Also since the terrorism scares there is the extra faff of having to arrive really early at airports to get through security then hanging around. Our local airport is terrible with instrument of torture seats in a single waiting room with 2!!!! toilets only (and no food) after passing security so if you then have a delay on your flight as happened the last time we flew to London it’s even more miserable.

        • L March 7, 2017 at 10:36 am

          Yeah, I am not a fan of flying either. In the past I have had to take xanax to fly. Not sure what I would do now post-floxing. And I too have short legs (and a long torso) but not so much that I have a problem with the seats….just the uncomfortableness that everyone shares

      • Barbara Arnold March 5, 2017 at 12:20 am Reply

        Jeez Madge,
        Just reading your post made me mad. How absolutely disgusting that someone in that position did that to you. I always say people are only human and make mistakes, but to blatently lie about it, is the worse kind of behaviour from a so called “health care worker”
        Make no mistake I would sue if it was humanly possible, but unfortunately here in Spain it would be like Russian Roulette. It would take all of our money and then some. Also it would take what health I have left. It’s impossible, and the fact that NO ONE is made accountable in all of this is an absolute disgrace.
        You are so right about letting the anger go, if only I could just find a way to do that. The trouble with this stuff is you can’t get away from it as every day I wake up in pain and it’s the first thing I think about.
        I am no where near as bad as some, and I do have a life, so I try to concentrate on that. I am on vacation to Cuba in a couple of weeks, and I just know that it will help. This would have been impossible at one point so I HAVE come a long way.
        My thyroid test came back okay, thank goodness, also my vit D level. I take 10,000iu a day. If I am in the sun in Summer I stop taking it. But I do take it all winter.
        I am now waiting for an ultra sound I think that’s what the Cardiologist said to check out my heart as I have an arrythmia, but I think that also will be okay as he listened to my heart and said it sounded okay. Fingers crossed and thankyou for asking.
        It’s great that some one understands all these emotions we go go through, at least we
        know we can say what we feel without stupid imputs from those that just don’t get it. Thanks Madge xx

        • Madge hirsch March 5, 2017 at 3:48 am

          Ditto for suing here.See my reply to L above. When my mother died in England in 2008 I was at her side . She was able to die at home as she wanted but her death was made harder by the bungling of a GP from her surgery writing a prescription so badly that the nurses could not read it. Though they knew the correct dose of drug to give her they had to give what was written and therefore had to get a locum doc ( it was at night) to come and rewrite the scrip! Bh the time he did this and the nurses could come back to administer the drug she had died but in more respiratory distress than if she had got the drug when she should have. As you can imagine this was very hard for me -watching someone you love die and helpless to ease their suffering. I had to fight for several months to get an apology from the arrogant shit who refused to acknowledge he had made any mistake and when the Manchester medical authorities finally pressured him into writing a letter of apology it had a very insincere ring about it. The whole process of letters and phone calls was very stressful and each time brought the experience back.
          I count myself lucky as I am quite mildly floxed although like you I have pain everyday. This does vary though from not much to walking being difficult when my hip tendons hurt. I hope you enjoy your visit to Cuba . The patronne of our local fave restaurant goes to stay with her daughter in Guadaloupe most winters and she was in Cuba this year. She likes it a lot. I cannot fly long distance as my back is too bad and the plane seats are instruments of torture! A couple of necessary trips to London for a funeral and then seeing the lawyer about the estate were bad enough. Ryan air is pretty basic! After the second flight there I felt that all my floxing symptoms had returned and when we returned I had to stay in bed for a couple of days I was so wiped out. The vile polluted London air does not help either!
          Glad your thyroid results were ok . Did they give you the figures? The normal ranges are too broad and if you are close to the limit you might still benefit from treatment.
          I would be inclined to take a lower dose of vit D in summer. I take it all year round. A sixty to seventy year old skin only makes one third of the vit D a twenty year old skin does for the same sun exposure. If you take a statin that depletes it even further as cholesterol is needed to make it. You should get a test done just before stopping taking it and again at the end of October if you do not take it this summer to see how much you you have. If it has gone down a lot your skin will not be making much.
          Hope your ultrasound is ok. When I had mine done the doc could not find my heart at first. If appeared to be in my stomach area! Bisous Madge.

        • Barbara Arnold March 5, 2017 at 4:34 am

          Hi Madge,
          Really sorry that you went through so much with your Mum. Horrendous, I can’t begin to imagine how you must have felt. They are all shits, and arrogant with it. My mum in law died last year aged 92yrs. She was an amazing, bright, positive woman. They got her meds wrong and turned her into a nut case. Because we were here in Spain we had to communicate by phone to another arrogant little shit who thought she had altzimers, so far from the truth. After frantic calls to macmillan nurses who knew her, we finally got her meds changed and got her back.
          If this episode has taught me anything, it’s to not trust ANY DOCTOR and to be extremely vigillent with any meds they prescibe. They cannot possible know the interactions that take place with other drugs a person may be taking. We have to take care of ourselves as they certainly wont.
          I showed my ND my thyroid results also vit D which I had previously researched myself and he said they were okay to. He is one of the rare medical Doctors who says medicine today is really bad. I dont take any statins, he says they are horrible. So I am trying to stay healthy with diet. Gluten and sugar free. Etc
          I will take your advice about taking a lower dose vit D in summer, I think thats a good idea.
          There was a time there was no way I could fly, but now instead of worrying about the cost and after whats happened, we always go for more leg room (we are both tall) and if its reasonable we tend to upgrade as much as we can. I always wear flight socks which help, and I tend to avoid Ryan Air as much as possible ha ha, but if we go to the UK it’s only a couple of hours which I can cope with. I dont go much now and Never In Winter if I can help it.
          Hang in there Madge, its good to have a rant now and again, but ultimately your right staying calm and relaxed helps us more physically and mentaly.
          Good talking to you xx

        • Madge hirsch March 6, 2017 at 10:09 am

          Thanks Barbara, it is nine years ago now but this week it has all come back as my step father died. He was diagnosed with a very aggressive form of skin cancer and it has all happened very quickly but my sister said they tried very hard to save him when he started haemorrhaging and his organs started to fail. But he was 86 and robust and fit most of his life . Unlike my poor mother who suffered from RA for twenty years plus COPD. I suspect strongly that she was floxed to death as with the COPD she had regular antibiotics. Her doctors were all useless.
          My problems with plane seats are the opposite. I always have plenty leg room but my legs are so short my feet do not reach the floor! I hate flying anyway. Most of our travel is done by motor bike. We cannot hack long journeys the same as when we were young but we are planning a trip to the Spanish side of the Pyrénées this year. Have a great time in Cuba. Best wishes Madge.

        • L March 6, 2017 at 10:13 am
  3. Janine Allio March 10, 2017 at 9:44 am Reply

    Lisa Hi. I want a grandma like yours! Finally went to a Western MD highly suggested. He said pain in knees is arthritis and did not address the pain in knees, neck,numbness in feet etc…is this really all about CIPRO. The tec. In the X-ray dept got floxed some years ago! Even more scared! Please send reassurance…

    Blessings, Janea Janeastar86@gmail.com

    Sent from my iPad

    >

    • L March 10, 2017 at 9:54 am Reply

      While you’re waiting for a reply from Lisa I wanted to mention a couple things. Sadly most MDs are CLUELESS about this. I had excruciating mid back pain after Cipro and a doctor said it must be arthritis. (Oh yeah, it was just a coincidence that it came on at the same time as 3o other side effects.) Within weeks of getting IVs from my ND, it was gone. I also had pain and popping in my knees and other areas. Turned out to be torn meniscus (and cipro is known for destroying connective tissue.) I don’t care how well regarded a western MD is (the one that floxed me had won a “best in the county” award) if they are not integrative, you are really rolling the dice. I suggest you find and ND or an integrative MD.

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