Aa
Aa
A
A
A
Close
Avatar universal

Thinline's latest update

Hello all.  Well, I’ve had a few mails and people on Sunshine’s record breaking thread asking how I am, so here’s an update.

We all know the Peanut Ball broke through my haze of misery, but I’m still very up and down emotionally. I’m putting the blame of my ups and downs on medication I’m on and some I’ve stopped. I have good days and bad days, but I suppose we all do. I cry often, but the good thing is I laugh too. Some days I find it difficult to get out of bed, no jokes here, I mean this literally, I can’t get out of bed.  My hips have joined my back and are leading the race in the arthritis stakes, so I lie there struggling to get up.  Eventually I wiggle my way to the edge of the till I fall off, then at least I can get up off the floor! Charming isn’t it?  Sometimes I wake early take some MST (Morphine) go back to sleep, then when I get up later I’m ok, saves a few bruises, but I put comforters next to the bed so when I hit the deck it’s a soft landing. It’s rather funny actually. My hubby does not know about the falling out to get up thing, it would upset him. We sleep in different rooms because I’m still on oxygen at night and the sound of the machine bothers him.

I’m seeing a psychologist to help me cope with the guilt I feel about being sick and hurting my family. I don’t think we are progressing. She’s compassionate, but whenever I go I seem to be having a good pain day or in a good mood so she seems to be in awe of my ability to cope with everything.  She’s never seen me on a bad day so I don’t think she quite gets it. So much money, so little progress!

I had a sad moment today. Someone I used to converse with elsewhere mailed me to say he’s been reading my posts on some threads, and he was horrified that “I’m not the Thinline he used to know”, says I’m getting just like the other Medhelp lot and feeding my depression (I disagree by the way), but it broke my heart.  I’m still me, just a bit different. He has not seen how far I’ve come. Told me to “GET UP”.  I understand where he’s coming from but he has obviously not followed my saga as many of you have, so I don’t think he fully understands what really happened. I mailed him to explain, hope he does, because if only he knew how hard it is for me to “GET UP” every single day.

My current health is that the Reiters Syndrome (Reactive Arthritis) persists.  The pain is severe.  My swollen feet and ankles have come down a lot since being on lasix. I suspect the arthritis is now in my feet because they are sooo sore.  My docs have turned their backs on me. I think it’s either because they don’t know what to do with me from a medical point,  or they have made an error or missed something, and are now covering their butts.  They don’t know me well enough, I will never let it go, I will fight to the death to get the answers I need. My GP is now the only doc I see. I have a book to finish by the end of March so till then I don’t have time to deal with doctors who hide when they see me.

I am very concerned that the salmonella is still active in my body.  I’ve developed a funny cough, also been vomiting quite often for no apparent reason.  It’s strange, and happens with very little warning.  I don’t feel nausea for more than a few seconds before I get sick. I have low grade fevers often. Sometimes my face feels strange and when I speak I can’t form words properly.  The worst is that my memory seems to have taken a holiday without me. I have to write down absolutely everything as I can’t remember things. In meetings I write everything down because I have no recollection of what has been said an hour later. People say I keep repeating myself too. Very scary.  I also have not had a period since November, that went on holiday with my memory. Definitely NOT pregnant.

My bone scan was “inconclusive” – it’s since the scan that the doctors avoid me like the plague, which makes me suspicious of them.  My hair is still falling out, I had it cut very short so it doesn’t look as bad now, no hats yet. I’ve heard such terrible things about salmonella eating away at people’s spines, leaving them paraplegics. They also seem to be partial to eating the lungs.

The other day – out of the blue and a doctor from an entirely different hospital phoned me.  He said he can’t help me because he’s a gastroenterologist, but that if it moves back to the gut he’d love to help me. He said my cardiologist had told him about me (this is the cardio who refused to see me because salmonella “is not his thing”), but he wanted to offer me any support he could. He was amazing.  Told me my docs have no right to ignore my calls and not to let them get away with it.  He was really angry about it.

So all that’s my story. I’m off to read a bed-time story to my little one.  Good-night.
9 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I totally understand not wanting to give his name out.  But if you talk to him at any time, please ask.

I will try to find some time to read to the kids.  I know it is most important.  It helps them not only intellectually but emotionally as well.  My brother and his wife are doing that with their 4 month old.

I'm sorry to hear about the fentynl patches.  Okay, dumb question: isn't fentynl the drug they give you to put you "under" for operations?  Maybe I am confusing that with somethig else.  I just hope whatever you take relieves some of your pain and misery!

Have you been playing on the peanut ball lately? :-)
Helpful - 0
Avatar universal
When I was pregnant I used to read aloud so the baby in my tummy could get used to my voice and he could get to hear the stories I was reading (hardly appropriate for a fetus).  After he was born I vowed that I would carry on reading, and that's what I did, sat in bed, baby at my breast, reading my books aloud, it seemed to calm him.  From when he was six weeks old we have read him a story pretty much every night of his life, a few times my husband has let him watch tv instead if there's a good movie on Disney channel which he particularly wants to see.  I much prefer to read though, it's such a special time, I don't know who enjoys it more, him or me.

As far as giving out my cousins name, I'm hesitant to do that without asking him first, but he's not a cardiologist.  I think he's what you in the US call an Internist, does that sound right?  We would call him a Physician, or a Specialist (as opposed to just a doctor or GP), and I know he has specialised as an ER doc too, so he mainly works in the ER.  I think he's busy training to become an anesthetist, he says being in the ER constantly seeing all the horrors is getting him down.

I went to the pain management clinic today and we discussed the fentynl patch and its just too expensive for me.  The doctor phoned the company who import them and will try to find out if there is any posibility of getting a free trial, but the chances of it happening are almost zero.  So I'm going on with the MST for now.  At least they work but my dosage goes up every third week which is very worrying.  I told her I skip doses sometimes and she was really angry, told me I don't have to try be a hero - she would rather me take lots of MST than be in pain.  She is an amazing woman, really gets it.

Please try find a few minutes to read your kids a bedtime story sometimes.  It will fill your heart with love when you see how they enjoy the closeness, not to mention the story.  Get a couple of really short stories, we love the Dr Seuss ones, they are great fun, it will really do your heart good.
Helpful - 0
Avatar universal
I think it's really nice how you read him a bedtime story every night.  By the time I get home and feed the kids, bathe them, and get clothes ready for the next day I kiss them goodnight and make sure they say their prayers and that is it :-)  My youngest two are just a tad older than your little one, but I am sure they would enjoy a bedtime story.

Are you able to refer you cousin, the doctor on this forum?  If he's good I would love to visit him-just let me know.  What area does he specialize in?

Oh yes, we have the hallmark channel here too.

I am sorry you are feeling bad.  Let's pray for a miracle that you are able to get the fentnyl for a reasonable price.  You deserve some type of compensation for all you have gone thru.

Helpful - 0
Avatar universal
Hello again.  Ok, the time here is 7:50pm right now.  We use GMT and we are GMT+2.  We are 7 hours ahead of Atlanta (I only know this because my husband's Aunt and Uncle and 3 cousins live there.  Two of those cousins are doctors and one of them has been helping me understand what's been going on all through my illness, I couldn't imagine a more compassionate and competent doctor on the planet!

Lifetime channel, the way you describe it sounds just like our Hallmark channel, also lots of reality based tear jerkers.  

I am having a bad day today, my hips, lower back, ankles and feet are more sore than usual, so once again I've let the pain get on top of me.  I'm going to the pain management clinic tomorrow, they want to put me onto those patches, I think they have fentnyl in them instead of morphine, but they are unspeakably expensive, and there's no way I can afford them.  Will see what happens.

I'm off to read my little one a bed-time story - best time of the day for me, I love that closeness we share when we read.  He's six and has started to read on his own, he's in first grade this year and loving it.

Good night.
Helpful - 0
Avatar universal
I am now in tears over the story you sent.  I don't even have the words.......there is always someone who has it worse then you, that's what comes to mind.

I am so sorry you are not feeling well today-being sad that is.  There are so many people on this forum who are here to support you and who think of you as a hero in her own right :-)  Please try to keep your chin up as I will be praying for you!

I used to LOVE Gray's anatomy but haven't watched it in a long time.  I do like Private Practice when I can REMEMBER to tune in :-)  Lifetime is actually a channel and they show "girlie" movies, tear jerkers a lot of times.  I heard that most of their stories are based on true stories, but I'm not sure how accurate that is.

I'm sorry to hear of all of trobles you all are facing right now.  That is really something when you have to ration out electricity!  Here in Georgia we are on a water restriction, but it hasn't gotten that bad-not yet anyway.

I hope your day-well I think it's nightime now where you are-but I hope you are able to get some rest and wake up in the a.m. feeling refreshed.  Be blessed!
Helpful - 0
Avatar universal
I am humbled by what you have written about me being an inspiration.  Thank you.  I find it difficult to be thought of like that, I’m just me, and I thank iamfaithful’s GREAT physician for giving me the type of personality that I have.  The thing I love most in life is laughter (aside from family of course).  Laughter gets me through the really rough patches.  I think when I lose the ability to laugh, that will be the end for me.  I love to laugh, I love people who laugh aloud, I love cultures who laugh at themselves (us Jews are famous for it), I love to hear one of those great big belly laughs coming from my son.  We in SA are going through a bit of a rocky patch, so at the moment laughter is especially important.  We have run out of electricity – now this is nothing to laugh at, it’s horrible, every day some areas electricity is switched off so that a different area can get some – it’s called load shedding – and the one good thing about it is that it has given the cartoonists from the newspapers an unending topic to keep us all laughing.  We live in a funny country here, but its not always easy.  Iamfaithful, the program you mentioned is not one I’ve seen but I’ll look out for it.  My favorites are Gray’s Anatomy, Private Practice, and Survivor when its on.

I would like to tell you about three incredibly inspirational people (Nelson Mandela is not included because it goes without saying that he’s an inspiration):

The first is our spectacular swimmer, Penny Heyns.  She was on the fast track to being an Olympic swimmer when she had a scooter accident while riding to training at the pool.  I think she was about 17.  She was severely injured and had to have one of her legs amputated.  She’s awesome, has broken many paralympic records and would much rather swim in the “able bodied” Olympics.  Sadly she missed qualifying by a second or two.

The other person is Oscar Pistorius, he’s a phenomenon.  He has no legs, but is an incredibly gifted athlete.  He only wants to run with “able bodied” runners and has fought tooth and nail to be allowed to.  Sadly, they have just ruled against him because his artificial running “legs” give him an advantage over other athletes – HELLO the guy has no legs!  How brave do you have to be to take on the running administration to fight for your right to run with everyone else?  He is an inspiration to many.

The third person is called Alison.  I have forgotten her surname, but everyone in SA knows about her.  Late one night she was hijacked (this is a rather common crime here).  In the morning a man came driving along and saw what he thought was a heap of clothing lying in the road, he drove on but had a strange feeling that all was not right with the heap in the road so he turned back to check.  What he found was a horror.  A young woman with her throat slit from ear to ear.  Little did he know what else she had endured.  He called an ambulance and waited with her until it arrived.  She was taken to hospital where it was discovered that she had been gang-raped repeatedly all night long by four men.  When they were done with her they cut her throat with a knife.  Her injuries were so severe there was very little chance she would survive.  The injuries she had suffered from being raped repeatedly made it probable that even if she survived, she would be unable to have children.  Alison did recover, she married the man who had stopped to help her and had held her hand while waiting for help, a few years ago she conceived naturally and was blessed with a healthy baby.  Today she is a motivational speaker, she travels the country to prove that you can recover from the most hideous of injuries caused by crime, and that forgiveness can help you heal.  She is probably the bravest woman I’ve ever known of, and every time I think of her, I feel proud of her.  She went through utter hell, but out of it all came this strong and brave woman.  I don’t know how she did it, especially the fact that she forgave her attackers, even though they were never found.

Thank you for making me feel special too.  I’m feeling sad today, and your words have once again made me feel better.
Helpful - 0
88793 tn?1290227177
I saw you posted yesterday so I knew you're still OK.  

"Doctor is not a god!" but they can give lives and they also can take lives away.  I remain unknown what's going on with me.  I see what you have suffered today, would I get it the next?  I am scare but I'll learn as tuff as I can, like you.

Some people said, hair falling massively could be a sign of anemia or low iron too.  Have you checked it recently?  

I updated my gastroscopy and colonoscopy results at your last updated post.  

I just have my blood tests done today.  Probably, will be all normal again.  

I crushed on my daughter at the weekend.  Forcing her to leave with tears.  I cried so badly.... Sometime, all these what we suffered seems no one can understand........  Well, we're still looking for tomorrow in a every day bases.  

Here come my hugs, plenty of hugs to you, Thinline.  Get well soon and take care.
Helpful - 0
343765 tn?1202522532
I cannot believe how many responses I have gotten on here. That is awesome. I want you to know that you are my inspiration. You are such a fighter. I admire you for your spunk. You can't get a good woman down. I pray for your recovery everyday and I hope that each of you will continue to pray for me also.I love this site and I will continue to use it. I love to read others stories and people helping people through hard times. I I am here if anyone wants to just blow off steam or just have a pity party like me. I get invited to those quite often.LOL. I hope that everyone has a wonderful day and a perfect heart beat. LOVE YOU ALL!!!!!!!!!!!!!!!!!!!!!!!!
Karen aka Sunshine47
Helpful - 0
Avatar universal
Hello-

I have been keeping up with your story for quite a while but have never replied to you.  I want to tell you that you are one of the BRAVEST people I DON'T know :-)  Seriously, I read the post and I always think to myself, "this woman is UNBELIEVABLE!!!"  I don't have any crafty words to send your way, but thinline, you are an inspriation.  I think of everything you are going thru and you can still work and you can still type on the computer! AND you can still give advice to others-mercy!!  I get a couple of bad PVC's and I'm ready to call it a day.  I mean, how dare I complain, how CAN I?  God has definately smiled on you because you have truly displayed what the bible talks about...."patience in suffering."  You are such an example of that and you seem to have a faith that is unwavering.  I know you have good days and a whole lot of bad ones, but my goodness, you still keep plugging right away.

You know I have three kids and it makes me tear up whenever I don't feel well because all I can think about is them and how they need me (or maybe it's how I need them).  I read about your son and you all falling off the peanut ball (is that right) and I end up laughing with you.  I swear, your story is almost straight out of a "Lifetime Movie!"  Do you all watch that in South Africa?  One of my favorite teachers in Academy was from South Africa and her name was Mrs. Heslop...I loved her!  You are the second South African I have had the pleasure of knowing (somewhat).

Well girlie, hang in there and try not to get discouraged.  The doctors don't know everything and as long as you have the GREAT Physician on your side, how can you lose?  Do you know who I am referring to when I say that?  I'm sure you do.

Be blessed thinline!!

P.S, what's the time difference between South Africa and USA?
Helpful - 0
Have an Answer?

You are reading content posted in the Heart Rhythm Community

Top Arrhythmias Answerers
1807132 tn?1318743597
Chicago, IL
1423357 tn?1511085442
Central, MA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Are there grounds to recommend coffee consumption? Recent studies perk interest.
Salt in food can hurt your heart.
Get answers to your top questions about this common — but scary — symptom
How to know when chest pain may be a sign of something else
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.