Got to laugh……………………….

Well you have to have a good laugh especially after the letter I received from Lilith, as hubs and I are calling the Rheumy I visited on Wednesday. She was so devoid of human warmth or personality that we named her after Frazier Cranes wife!

I wasn’t hopeful that her report would be particularly nice reading. I expected her to say that I wasn’t doing enough to keep my joints strong and my weight was causing the issue. You could have knocked me down with a feather when I read her letter. It was a typical Dr’s letter but at the top it read

Diagnoses: General Joint Hyper mobility (possibly Ehler Danlos Syndrome type 3)
Possible Myasthenia Gravis

I have highlighted the bit that made me laugh the most! Her reasoning behind why she felt I had Myasthenia Gravis, that’s because I respond to pyridostigmine bromide (mestinon) and I turned up to the appointment with the right side of my face looking like I’d had a stroke and my right eye closed with ptosis. She told my GP to refer me back to my old neuro! Laughed I nearly fell off my chair. He’s going to be so thrilled to have me back on his books. I am expecting he will hand me off to a registrar or colleague rather than have to deal with me again. After all it would be a bit embarrassing to have to deal with the lady with numerous conditions after you gave her a clean bill of health 12 months earlier! After writing in her notes its all in her head.

That’s what is quite good about living in a small area (and what can be quite bad about it) there’s only one hospital in my location and one neurology team that I can be referred to. So all his colleagues will know I have been his patient previously.

I had been beginning to think that maybe I had chosen the wrong name for my Blog and it was an act of fraud masquerading as the myasthenia kid. I had been contemplating changing the name, what to I had no idea. The name just didn’t sit well with me anymore.

Outside the world of Blog at medical appointments and the like I didn’t mention the condition Myasthenia Gravis. If anyone asked me about my facial weakness and ptosis I would just say no one knows what causes it, but it responds to pyridostigmine bromide (mestinon) and leave them to draw their own conclusions. I believed I would never actually find a name for what was causing my ptosis, facial weakness and my ability to choke on my own saliva at frequent intervals throughout the day. I sought other answers for why this happened but nothing really explained why I responded to mestinon. Don’t get me wrong I’m not considering one Dr’s opinion a diagnosis, after all neurology is not her speciality. Its just really made me laugh that the diagnosis of MG has reared its ugly head again.

She notes in her letter that I have hyper mobile fingers, knees, spine and wrists. I didn’t realise that your spine could be hyper mobile, I know it causes me pain  and its obviously a series of joints but I had never even considered it. Also my scar from my operation to remove bowel adhesion’s in 1998 is tethered – I don’t know what that means exactly all I know is it looks a bloody mess. Plus I have traumatic scars on my knees! Sounds dramatic doesn’t it? All it means is that I like to fall down …. a lot!

She informs my GP what medications to put me on gabapetin (that may be spelt terribly wrong but I am really tired so please excuse me) for nerve pain to try and get it under control. I am also being referred for physio as we know already.

So what she lacked in personality and warmth she made up for in her letter. Its a clear concise report with no Dr double speak and nothing to be read between the lines. It has a couple of errors such as she has made my weight 20 kilos lighter than it actually is. That was a bonus! Until you read the next sentence that says I am overweight! I know I am but how am I supposed to lose weight? I barely eat due to the gastroparesis and movement causes pain or fainting? I’m hardly going to nip out for a jog.

So presently the joints are still sore but the wallet isn’t hurting so much.

latest update

Thank god its Friday, its seemed like a very long week and I am exhausted. Two Trips to the local hospital have wiped me out. Yesterday I had a three hour nap in the afternoon and went back to bed at 1730. I slept for eleven hours only waking up once at 2am when it started raining and it reminded me I needed to go to the toilet!

My fludrocortisone has been increased to two tablets a day as my blood pressure at the consultants office was 105/60. In the normal range but low if you take into account by weight, height and age. The consultant who is extremely funny said “your blood pressure has reached the dizzying heights of 105”. He would like me to go back onto mestinon regularly as it increases your blood pressure on standing, however he is doing some research to see if he can find a drug I can take that will help me tolerate it. I used to take propanthaline, with the gastroparesis this kind of drug is no longer allowed as it slows everything down. Mestinon speeds everything up digestion wise so its quite good for gastroparesis, I just find the side effects too much.

The consultant didn’t seem to find the idea of loads of physio and hydrotherapy such a brilliant idea. He told me my POTS was too unstable at the moment to be entertaining such an idea. He then dictated a letter to the Rheumy I saw Wednesday saying he must be involved in any plans she had. I did tell him that I felt she had absolutely no idea about POTS and was worried that in her ignorance she could do some damage.

Their two approaches are completely different, POTS man won’t allow me out of my wheel chair in his office. Rheumy lady made me walk the furthest I have walked in years causing me immense pain and shortness of breath. When I complained I was told “just because you are in pain it doesn’t mean its doing damage”. Tell that to my hips and back that have been in an elevated level of pain since you made me do that. At a cost of over £4 a minute she has not only hurt my wallet but my body too. I should have been stronger and said no, however non compliance never goes down well in the medical world. You become an attention seeker or mentally ill if you refuse to do something.

I have taken my pain killer cocktail today 2 Naproxen (250mg each), 2 paracetamol (4 hourly), 2 Tramadol (6 hourly) and I am still hurting. So the pain is at a five, my back has seized up and is going in and out of spasm. My wrists and hands hurt and my head is refusing to support my neck. I know I need to exercise to strengthen the muscles I’m not disputing that. What I didn’t need was to be forced to run a marathon on the first day. OK so it was a walk down the corridor but it felt like a bloody marathon. Not only that but she followed me so I couldn’t get back in my wheel chair the minute her back was turned which was the plan because I knew the amount of pain I would be in.

When I get pain like this its not only the joints but my internal organs feel like they have moved. Its a bizarre thing to say but its the only way to describe it. When my chiropractor used to manipulate my pelvis as it rotates of its own accord I was left with the same churned up feeling inside, like everything was in the wrong place.

My old chiropractor called Heather was brilliant, one of the nicest people you could ever meet. Unfortunately she moved her practice out of my town and now its too much for me to travel and see her. She kept saying years ago when she treated me that there was something very wrong with my joints, due to the way the manipulations never held and my back would just seize up so I couldn’t bend. She discussed it with her colleagues but they didn’t have the medical knowledge to know what it was. I brought it up with my GP at the time (the one my mum gave it to with both barrels) unfortunately he thought chiropractors were just one step away from witch doctors on the alternative medicine scale. So it went no further.

Since the EDS diagnosis all I have done is cringe at all the damage I have done to myself. I was incredibly active, much more active than any of my friends. I loved doing exercise video’s, running, walking, playing tennis and netball. When I hurt myself I would work through the pain. In 1999 I really damaged my back at an exercise class. We were doing the warm down and I was relaxing lying on the floor doing a stretch and then there was a massive crunch and I couldn’t move my legs. The crunch was so loud that several people sat up and turned around. That was the injury that really screwed up my back ……..done in the warm down. I had slipped discs before but this was something else. I tried to carry on but I couldn’t put my legs back flat on the floor when lying on a hard surface. I went to work the next day but came home a few hours later sobbing as the pain was so intense. I remember my sympathetic female boss at the time telling me to “suck it up and stop acting like a baby”. I was in agony and didn’t know what to do with myself.

My back has never been the same after that injury. The GP told me I had slipped a disc and to do some gentle walking. I have been left with bouts of nerve pain down my left leg where it burns or the skin becomes so sensitive I can’t stand anything touching it. I have been back and forth to the Dr’s telling them I am in pain and just got handed pills. I was around 25-26 years old and I guessed they just presumed I was young and fit enough to shake it off.  That’s over ten years ago and I am still suffering.

The EDS diagnosis has also made a lot of sense. Of course I knew that I had it, I’ve known for about a year after joining various forums and looking at the Beighton Scale and the Brighton Criteria. I had always thought I was a wimp when it came to the dentist, I would be pumped full of local anaesthetic and it would still hurt, despite the dentist telling me it couldn’t. I thought it was all in my head, that it didn’t hurt it was just my fear making it hurt. You will tell yourself all sorts of things if someone in the medical profession is telling you it doesn’t hurt.

So now I just await my torture sorry I mean physio appointment and see what they can do for me. Unfortunately it means more trips into the local hospital and more exhaustion, before I have even attempted to make my muscles stronger. Its a vicious circle but I need to do something. Even if the rheumy said she doubted that they would get my pain under control…..thanks for that love I’m 37 the chances are I will live until I am at least 80. So if I manage that I have another 43 years of pain to endure. I think I am just going to have to take it one day at a time!

Just a quick one!

Saw the Private Rheumy today £250! worked out at over £4 a minute!!!

I finally got my diagnosis of Ehler Danlos Syndrome Type 3!!!! In a weird twist of fate my sister also got diagnosed today. Its strange enough we both had appointments with Rheumy’s today but to get the same diagnosis BIZARRE!!

I am tucked up in bed and doped up to the eyeballs as every joint in my body hurts after doing my contortionist act for the Dr.

Sorry this is a short one but I am at the hospital tomorrow to see my POTS team. The journey will be horrendous as the Devon County Show starts tomorrow so our sleepy town will be gridlocked. We are leaving at 815am, the appointment isn’t until 945am! That’s how bad it will be.

Just for Fun

This is tongue in cheek and just a bit of fun. I am typing this whilst waiting for a home visit from a GP.

Things that make you realise you are sick:

You Know Your Sick When …….

1. Your mum can tell what sort of day you are going to have by the tone of your voice when you ring her in the morning.

2. You only shave your legs / armpits for hospital or Dr appointments.

3. You need a carrier bag to take you medications anywhere with you.

4. When your husband rugby tackles you to the ground as he knows by your glassy eyed stare that you are about to faint.

5. When your husband rings the GP practice and asks for a home visit and the Dr’s receptionist doesn’t bat an eyelid.

6. When the pharmacy staff no longer ask to see your medical exemption card for free prescriptions.

7. When the dog is puking on your bed at 1am and you shove your hands under his mouth to catch it rather than let it go on the sheets, as the thought of having to change the bed makes you cry.

8. When the Consultants on the Emergency Medical Unit at the local hospital know your name and pop by to say hello!

9. When the paramedics turn up and know your name!

10. When you know your pulse rate without measuring it.

11. When you clean your teeth six times in three hours as you don’t remember doing it the first time.

12. When friends and family know what you mean despite the fact you have said the wrong word….again. For example I called a tractor a helicopter recently.

13. When market researchers phone you and you are more than happy to take part in their short survey as its the only human contact you have had all day.

14. You regularly check out the disability aids on Amazon to see what cool new gadgets they have.

15. You own a pulse oximeter and a blood pressure cuff.

16. You are a member of more than one health forum.

17. You become irrationally pissed off with people when they moan they have a cold.

18. You do as much as you can to self treat rather than call the Dr again.

19. You have an unlimited amount of carrier bags in the car so you can puke discreetly.

20. Your standard item of clothing becomes sweat pants or PJ bottoms.

21. When you haven’t washed your hair for four days, let alone put a comb through it and you don’t care!

22. When you read articles in the newspapers warning you about the levels of salt in food and actively go out and buy them.

23. When you tell the Dr what your care plan should be and they agree with you.

24. When your friends and family seek your advice on medical matters.

25. When you know the complete programming schedule of Radio 4 Extra.

26. You no longer criticise your husbands feeble attempts at housework because you are just so grateful he’s done it.

27. When a chemical toilet in your kitchen doesn’t disgust you.

28. You read a book and 3 hours after you have finished it you can’t remember what it was about and who the main characters were, so you read it again still none the wiser.

29. When you could quite easily turn in for the night at 1600 hrs.

30. When a Russian Doll hot water bottle becomes your favourite gift of all time.

Do you have any of your own that you could add to this list? I was only going to write ten and it was amazing how many came to me.

Been without the Internet for 48 hours

As the title says I have been without the Internet for 48 hours due my husband our our neighbour P redecorating our spare room – actually hubs bedroom. My router is plugged in there so hence no Internet, it was OK no withdrawal symptoms! But I have had a few people worried with my lack of contact for which I apologise. It was a spur of the moment thing a new carpet needed to be laid and as all the furniture came out of that room it was decided that it should be redecorated. It hadn’t been touched since 2004 and it was looking awful. Due to the walls being a sort of mid blue, it took several coats of paint to get it to magnolia! I did a few little bits that I could do sitting down but I am paying the price now.

As I had suspected for a few weeks now my gastroparesis is entering a bad phase after having been pretty good since October 2010. I have started vomiting again not just feeling nauseous and despite taking anti sickness meds a few hours ago I have already had my head over the kitchen sink. Its a nightmare as quite a few of the drugs I am on need to be taken with food and I can’t even think of food when I am like this. I even struggle to drink because the thought of swallowing anything makes me gag. So I have taken myself up to my bed and I am not going to think about it for a few hours and hopefully it will settle.

Even though when I am at a peak of a flare and vomiting several times a day I have to remind myself that I have this very mildly. Some people have to be fed by tubes directly into their stomachs or they have to have pacers put it which electrically stimulate the stomach to make it contract. I am very lucky, yes its horrible to be sick but I don’t have this day in and day out. My stomach works in fits and starts some peoples stomachs have completely stopped working.

The last few days I have struggled to keep myself warm, I have been stuck downstairs whilst hubs and P have been decorating. Due to the small size of the house the contents of hubs room has been in my room which has meant no bed rest for me. Although I have bed rest everyday I had no real idea how much I needed it. Plus its where my electric blanket is so when I am struggling to maintain my body temperature I lie on my electric blanket. Body temperature is always an issue for me if I get over tired I end up shaking because I am so cold. My hands have been an interesting shade of blue for the last couple of days. I only ever feel warm if I am in direct sunlight or lying on my electric blanket. Hubs and I laugh and say I am like a reptile basking on a rock.

Hubs is home on holiday for the next few days he has gone to visit his family who live an hour away today so I am home alone. Its quite nice after the hectic pace of the last few days just to have a bit of space and not having to pretend that I feel better than I am.

There has been a problem with Blogger for the last few days, I noticed a problem Thursday night when I couldn’t access the stats page, today I have noticed some comments have disappeared and I have had to re- publish comments that have been authorised before. So if your comment has disappeared it wasn’t me! I am hoping that Google have sorted this out now. Hope you are all having a lovely weekend.

Unexpected hospital appointment

I really didn’t sleep too well last night and as a result feel shaky and out of sorts today. Last night I was so thirsty I downed 3 litres of fluid between 8pm and 6am. I do drink a lot but even for me that was pretty good going. I spent most of yesterday in a great deal of pain and the medication only took the edge off. I am just so tired today I don’t know what to do with myself.

I have a unexpected hospital visit tomorrow. The gastro clinic rang at 9am yesterday asking if I could attend an appointment on Thursday so I accepted. Apparently they have been so busy they have been opening extra clinics and running extended sessions. I am hoping I have been booked in with them and not a surgeon which happened on the last visit. Which was a waste of his time and mine.

I am now panicking about what to wear and finding the energy to shave my legs as it is more than likely that I will have to strip off for this appointment. I am also concerned about what sort of state I am going to be left in after the appointment. I am really having a tough time of it at the moment and I will be sitting upright and legs down for hours tomorrow.

I have to repeat the process again a week tomorrow as I will have my appointment with my POTS consultant or his registrar. So I will have just got over the first visit and will end up doing damage again.

I have told hubs that if I am cold I will be taking a hot water bottle with me. I have a small Russian doll hot water bottle that I will be able to smuggle under my clothes to keep me warm. Ellie got it for me last Christmas and I have to say its one of the best practical presents I have ever had. It gets used every day. Its nice and small so its light and easy for me to keep with me. It genius I can’t praise it enough!

I am stressing out that tomorrow they will tell me I have IBS as I am currently going through a good period with my tummy. I still can’t eat in the mornings, I feel full still from the night before. This is posing a problem with taking my tablets as they all have to be taken with food. This morning I bit the bullet and drank a glass of milk. I hate milk, I am surprised it actually stayed down, if I had been nauseous it wouldn’t have done. Luckily this morning I wasn’t feeling sick I just wasn’t hungry or interested in food.

I am still vomiting at least once a week that level of vomiting I can deal with. Last summer it got to the point where it was every day and a couple of times a day. I lost a stone in weight which was great! Now however the weight has all gone back on because I am able to eat again. Plus I am on the florinef and that makes me retain fluid, my weight can fluctuate daily by 7-10lbs.

I have managed to keep my weight pretty stable and the weight is water, you can tell by my ankles and hands getting puffy.

So lets see what tomorrow brings ….. watch this space!

Please Feed The Fish and other such nonsense!

I had a little play around with my blog earlier and have changed things around a little bit. You may have noticed that there is now a twitter update for me, a list of blogs I am following, plus some fish swimming aimlessly about. Please feel free to feed the fish! All you need to do is click your mouse on their pond and bits of food will be left there! This starts a feeding frenzy they are actually quite relaxing to watch…..that sounds a bit sad.

 I’m not very good at keeping real fish, all the ones I had a kid tended to die from fin rot, so sooner than we had intended they all took the last flush to fish heaven. It used to really upset me that these fish died in my care. I’m good with furry animals like hamsters and dogs, it seems fish and house plants were never meant to do well in my care.

I thought I would share a couple of pictures with you that were taken earlier today. I’ve often talked about my early warning system Frankie and how when I am particularly rough he stays with me. As I am typing this he is at the end of my bed asleep. He has a habit that around 3 days before I crash he will stay with me constantly until I pick up again. For the last week or so he has been like my shadow. today however mummy Mollie got involved and she wouldn’t leave my side until Frankie took over. I didn’t have my mobile with me at the time so I couldn’t get a picture of her. I did however manage to catch Frankie.

Frankie on duty

This is Frankie fast asleep on my feet this afternoon whilst I am lying on the sofa! He has to be touching me when I am ill so he knows when I get up so he can follow me! The girls had put themselves to bed for an afternoon nap and normally Frankie would have followed them. Today he stayed with me from 1500-2200 just sitting on my feet making sure I was OK.

Mum moves I change position!

Obviously at some point in that seven hour period I moved, that’s OK Frankie had it covered! I changed from having my feet on the sofa to moving them to the coffee table. Frankie just moved and lay his head on my lap. He is one soppy dog! Its such a shame that he is so scared of other dogs that he gets all barky and silly when he meets them. He can be very loud when we have people at the house, he’s just doing his job protecting his mum, give him a carrot and hes your friend for life!

I thought I would also show you pictures of a couple of plants in the garden that are doing well in all the sunshine and showers we have been having.

Pink Broom

Sorry the picture is a bit out of focus as the wind blew! They are quite small pink flowers but very vivid so its a nice bit of colour in the garden whilst we are waiting for the Lobelia and Begonias to grow.


Again another out of focus photo! My eyes haven’t been brilliant today but I hope you can gather its like a giant daisy. Ive always loved Marguerite’s and this one my parents bought me last week end its more than doubled in size in the last week. It was very pot bound when it was re-planted so its roots are probably squealing with delight.

I know two posts in one day! I wont be on tomorrow as Hubs is day off and I will be spending time with him rather than being on the computer.

Thanks for reading xx