Monday, 30 April 2012

Compression Stockings - Rehab: Day 28

It's been a bit of a random day today. To start with I had to go to a local hospital to get accessed for some new compression stockings, that was fine until the bust company decided to change their times and routes so that no one knew how to get to this particular hospital. I ended up getting off at my regular stop for work and walking to the hospital - it's fairly close so it wasn't too much of an issue but still fairly far for someone in my condition.

As for the appointment itself it was really, really quick. The guy took my measurements and said that my new super strong stockings would be ready to pick up in a few days.

Work was tiring today. I'm running off of 5 hours sleep, which is not good. The insomnia was playing up last night and I didn't get to sleep until gone 3am even though I got into bed at 11pm and should of had 9 hours sleep. I managed to be on the phones for a couple of hours today but I needed some substantial breaks because my brain felt like it was turning into mushy fog. I've got a meeting with my supervisor on Wednesday to review my hours so I'll see what he has to say and take it from there.

I got home this afternoon, after making a quick detour to the pharmacy for some more painkillers (I have to go back tomorrow as they didn't have the correct dosage), to receive a call from the GP's receptionist. She said that there was another clexane injection prescription waiting for me, which is not great news. They must of had some time to go over my Doppler scan and blood work and decided that I need  to be on those damn things for a bit longer. I was hoping that it would be warfarin but it looks like I'll still be stabbing myself on my birthday so no drinking for me.

I managed to walk into the bed this afternoon with my bad leg so I'm now getting a big loverly bruise. I'm going to have to keep an incredibly close eye on that as I don't want another clot in that leg just for walking into the bed - sigh!

Anyway, it's 10pm here and I'm going to bed to get at least the 9 hours sleep that I need.

Unravelling Chronic Fatigue Sndrome

The mystery of Chronic Fatigue Syndrome is finally starting to reveal itself to the medical community. I came across an article called "The Mystery of Chronic Fatigue Syndrome Uncovered" on injuryboard.com and it goes on to talk about how activity in the motor control and motivation centers of the brain are different in a CFS patient compared to those waves of a normal, or controlled, subject. 

This new information is one step closer to figuring out what causes Chronic Fatigue Syndrome and how to treat it or even cure it. It's the same case with any new disease you don't know what you're looking for until you've found it, only then can you begin to then treat the symptoms or cure the underlying cause(s).

Related Posts:




Knee Pain - Rehab: Day 27

Another lovely rest day, well, I say rest I mean not much walking but still quite busy. I slept in late - not great for my clexane injections but I needed the sleep - washed my hair, went shopping, worked on some old blog posts, watched a lot of House, got in the bath, and watched more House with some cake. All in all not a bad day.

Walking around today, especially around ASDA, I noticed that I've got some knee pain sneaking through the pain killers. It's on the inner side of my knee which suggests it has something to do with the clot as the pain is radiating from that area. I'm going to get Dr Mannering to take a look at it in the week and compare it to the scan I just had. In the mean time I'm just going to have to take the pressure off my leg when I walk and to use the crutches more effectively.

Since coming out of hospital I have found it quite difficult to wash my hair and shower/bathe all in one sitting. My strategy for the time being is to wash my hair one day and shower the next or do one in the morning and the other at night. I find that if I do them all in the one sitting it makes me feel quite ill. I don't know if it's the heat or the excursion that makes it difficult or something else entirely but the point is that I can't do it at the moment. I'm thinking about getting a bath seat so that I can sit down whilst I have a shower, that means I probably be able to wash my hair at the same time without spending too much energy.

Energy wise I'm feeling pretty good. I think the last couple of days of rest has done me good and I'm ready to go back to work tomorrow for 4 hours a day. I've also got to go and get fitted for some more compression stockings tomorrow and to see Dr Mannering the hematologist on Thursday for a check up and to review the Doppler scan on my clots as well as the IVC filter.  

I've been sleeping without compression stockings for the last couple of nights as well and it's not as bad as the last time I tried. The swelling is minimal in the morning and I seem to be sleeping a little better at night too. 

My injections are playing havoc with me at the moment. I've got little hematoma (little lumps at the injection sites) all over my tummy which are quite sore to the touch and a fair amount of bruising to go with that. I've had to stop doing them myself at the moment as all of the pain free sites are damaged so my partner in crime is having to do them on the really painful sites which means I normally end up bleeding or in pain for a while. I should be back to self-injecting in a week or so once the bruising and hematoma have healed up.

One of the other side effects of clexane is hair loss. I noticed this morning that I'm starting to lose quite a bit of hair when I brush (20 - 30 strands compared to the 2-5 normal) and I've got a couple of small bald spots near my forehead. Luckily I've only got 20 days left of clexane so I'm hoping that my hair will start to grow back once I switch over to Warfarin.

Have you ever suffered with hematoma? If you have leave me a message with any tips you might have.

Related Posts


Sunday, 29 April 2012

Coming off of Birth Control: 3 Months Later

THIS IS A PERSONAL AND SENSITIVE TOPIC RELATING TO WOMEN AND THEIR SEXUAL ORGANS SO I WOULD HIGHLY RECOMMEND LEAVING NOW IF THIS IS NOT WHAT YOU'RE LOOKING FOR, YOU ARE SQUEAMISH OR HAVE DIFFERENT MORALS OR OPINIONS. YOU HAVE BEEN WARNED SO KEEP READING IF YOU WANT TO,  OR  YOU CAN DISAPPEAR TO LOOK AT SOME PUPPIES

CC Courtesy of Shemer, Flickr
It has now been three months since I had to stop taking Microgynon 30 due to my blood clot. There seems to be plenty of information out there on the internet and from your doctors about going on to a hormonal contraceptive, but there really isn't anything concrete out there explaining what it is like to come off of them.

Changes to my Body

There have been plenty of changes recently that I can contribute to coming off of the pill, although some of them can also be attributed to treating my blood disorder (Heterozygous Factor V Leiden Mutation). Just because they are changes it doesn't mean that they are all positive, some of them are downright horrible and one of the main reasons why I went on the pill to start with when I was 14 so I'm having to find some alternatives that wont actually kill me.

Skin

One of the reasons for going on the pill was to clear up the terrible acne that I had when I was younger and it did, I only got the odd spot here and there around the time of my period and that was it. I was hoping that when I came off the pill my acne would have disappeared but unfortunately it hasn't. It has certainly got better but I still get a lot of outbreaks on my face and across the back of my shoulders. I'm going to leave it until Christmas so that my hormones can level and if it still hasn't cleared up by then I'll go and get some acne treatment.

Weight Loss

I'm not sure whether this is due to coming off the pill, starting my treatment or perhaps a combination of both but my weight is starting to come under control again. I no longer put on weight for no reason and when I set my mind to it I can lose weight fairly easily. At the moment I'm focusing on getting my energy levels back up and getting mobile again so when I can move easily I'll start proper exercise and take it form there.

Food and Cravings

Since stopping the pill my cravings and lust for food seems to have diminished somewhat. Believe me I still have cravings for ice cream and cake around my period but I can actually turn down chocolate and treats during the rest of the time. Great for natural weight loss I can tell you!

Libido

Now here is a sensitive subject. A lot of people complain that when they go on the pill they lose their libido and looking back that was certainly the case for me. I don't know if it was tied to the depression that I was going through at the time but since coming off the pill my libido seems normal. Before I almost felt emotionally dead (others I have spoken to said that was the case for them too) but I appear to be coming back to how I was before starting the pill. If you're struggling with depression and you're on the pill I would recommend either stopping it or switching to another form to see if that helps.

Moods

My moods and certainly starting to level out now. Although I will still sometimes cry or get angry if I can't get my shoes on but that is becoming a rarity and I am starting to feel happier and more human. I originally went on the pill to control mood swings but as I mentioned above I was feeling emotionally dead. Looking back I think it was just because I was a teenager and your hormones will be flying around anyway but as I've gotten older they naturally leveled out and I think the pill just shut down my stronger emotions. 

Sleep and M.E

I am sleeping so much better now. I'm actually getting days where I can wake up feeling rested, that is of course if the insomnia doesn't get in the way and I haven't had a bad episode with the M.E (mine seems to come through in phases). I've stopped napping during the day I given the right circumstances I can feel pretty good on 8-9 hours of sleep rather than the 12-18 hours that I used to get. Again, I don't know if this is from starting my treatment or coming off the pill but it is certainly something to consider if you're having trouble sleeping.

Asthma

Strangely enough my asthma seems to have cleared up a bit. I have no idea what has caused it though. It could have been coming off the pill, starting my clot treatment or environmental, but given the fact that my flat has a leak from upstairs, growing uncontrollable mould and mushrooms I'm ruling out environmental. Either way, I'm glad I don't have to take as much medication for it anymore. 

Periods

These delightful visitors were the main reason for going on the pill. I suffer with very heavy, painful and long periods and going on the pill helped to control them - a little to well actually because they kept disappearing and scaring the hell out of me. However, since coming off the pill I have only had the one period and that was horrible. I had to change every 2 hours, could barely walk through the pain (don't forget I'm on 200mg of Tramadol everyday too) and I was constantly nauseous. Now, I don't know if that was because of the blood thinners that I'm on or whether that was just a natural period, or due to the fact that I hadn't had one for the last 2 months (and no I wasn't pregnant) I couldn't say. The only options that I will even consider are the coil and manning up and given the fact that I can't have a coil fitted until after Christmas (8 months from now) I'm going to have to man up anyway but we'll see how it goes.

Summary

So there we go, my 3 month update of coming off the pill. I'm still all over the place at the moment but I'm certainly not missing the pill and it's unwanted side effects and I guess I'll just have to man up through the horrible natural ones that I still get.

If you've had an experience of coming off the pill leave a comment and share your wisdom. 

Related Posts



Saturday, 28 April 2012

The Day of Rest - Rehab: Day 26

Today was absolute bliss. I did nothing! Well, that's a lie as I spent the day updating the blog, pottering around doing housework, eating, napping and watching House. The best thing though was that I was able to get my legs up for a good amount of time to get some swelling down.

I slept for quite a long time last night without the compression stockings on and the swelling was pretty good when I woke up. I've got a skinny little ankle at the moment and a big ol' swollen thigh where the head of the clot is. I can actually feel the clot if I follow the vein down my leg but it's really tender to touch so I don't do it all the time (ha, like I would anyway).

My feet have also been hurting quite a bit but they always do whenever I up my milage on them. A soak in the bath and a foot rub tomorrow will sort them right out - pass the lotion I need separate those muscle fibers!

I started on the 100mg Clexane injections and I'm not a fan of them - I miss the 80mgs which is odd seeing as they all hurt like hell. The needle is the same size of the 120mgs which is starting to become a problem. My stomach is black and blue and I keep hitting the muscle because I can't grab enough fat where I've lost weight. I might have to start doing them in my right thigh (still too much swelling on the left) on round on my sides but that will really hurt either way. I'm hoping that on Thursday Dr Mannering (hematologist) will tell me I'm on the last set of injections and that I can go on to Warfarin after otherwise I'm going to have some problems on the injection sites.

I'm going to start doing some yoga/stretching everyday and I long session at the weekends because my bad leg is tightening up again. This morning I couldn't straighten out my leg where the hamstring was so tight - it might even fix my foot pain.

Right, that's me done for the day. I'm off to watch some more House and get some more sleep.



Knackered is Not the Word - Rehab: Day 25

I am soooo tired! As soon as I got home I had to nap twice so as it's Saturday tomorrow I'm going to sleep until I wake up naturally. I'll write more about today after I've had another nap, I'm far too tired to keep writing.

Update

My nap may have turned into 13 hours of sleep but hey I was tired. On the upside though I felt better for it. As for what I managed to do rehab wise I was able to walk with one stick only! It was only across the road to the Co-Op and back and it was incredibly tiring but I did it.

The swelling in my leg still isn't going down and it's been more sore that normal. I'm not sure whether the increased pain is due to my increased activity (going to work etc) or whether it's because of something else. I'm going to the hospital on Monday to get refitted for my compression stockings so I'll ask the team there what they think. If they can't give me any advice then I'll ask Dr. Mannering my hematologist what he thinks on Thursday.

I also finished my 120mg + 80mg Clexane series so tomorrow I'll be on 100mg x2. Unfortunately it looks like the 100mgs have the same needle size as the 120mgs - I was hoping to have a little needle like the 80mgs but I guess I'll just have to put up with the bigger one for 20 days.

Friday, 27 April 2012

Life Can be a Pain in the Clotted Vein - Rehab: Day 24

She Canny Take It Captain! (Pretend I'm Scottie from Star Trek [Original])

I've clearly done more than I can manage this week - I'm absolutely knackered! My pain has been right up this week and my sleeping patterns have been off the rail, for example, I woke up at 10 to 9 (8.50am) this morning when I'm supposed to be leaving at 9am to get the bus to work. Well, I can certainly say that I still got to work on time but I didn't have any breakfast so I had a tummy ache with my pain killers. Needless to say I am currently not a fan of Factor V.

Pain is a Bitch (OK you can stop pretending I'm Scottie now)

For those of you out there who suffer from any form of chronic pain (pain that's lasted more than six months otherwise it's known as acute) it can be very persistent, no fun and a really pain in the ass! I couldn't get comfortable last night and this evening my muscles are just seizing up left right and centre. I'm thinking of upping my pain meds for a couple of days as it's clear that I'm not as well as I thought I was, I'm still going to go to work (for one I need the money) but I can't be galavanting off all over town like I have done this week.

I've also been getting a bit of discomfort in my chest as well. I'm not sure if it's my asthma playing up or the filter. To be honest I have been very, very, very bad with my asthma medication this week, I haven't taken my long acting filter for at least two weeks and it might very well be catching up with me - SHAME ON YOU (ME)! I think it's best to start the inhalers again tomorrow to get that one sorted, at least I'll then know if it's asthma or the filter acting up then.

Actual Rehab

I'm going to be having a good ol' stretching session this weekend to lengthen out my muscles and do some work on my thoracic spine and maybe with a roller to work out some kinks in my back and legs. As for rehab this week I've mainly been focused on getting to and from work, so walking basically. I've been averaging about 2 miles a day if I go into town afterwards (as we've established that's not a good idea at the moment) but only about a mile if I only go to work. I have a neat little pedometer (like the one below) that sits in my pocket all day counting up my milage - they're actually pretty motivational as I set myself little goals to accomplish during the day.

Side Effects

I'm getting some more side effects from my meds so on Thursday I'll be reviewing with the hematologist about alternatives even though I'm fairly sure I'm stuck with the clexane injections for at least another month. Anyway, the side effects I've been getting are:
  • Sore throat
  • Lip, tongue and mouth slits/cracks
  • Hair loss - starting to come out in clumps again (sad face here)
  • Hematoma - lumps on the injection site that get quite tender when touched at all
  • Bruising - I have a random bruise on my right (good) shin and I have no recollection of hitting it
  • Bleeding - where I'm running out of space on my tummy I'm starting to nick the artery/vein areas and draw blood from the injection site, I'm thinking of injecting on my thigh but at the moment I can't grab enough fat to avoid the muscle with the current 120mgs but tomorrow's my last day of them so I'll try on the 100mgs.
  • Mood swings - I think this is mainly to do with coming off of birth control (aaarrrrrggghhh)
Anyway, that's my little rant over. Go have a look on Amazon for funky stuff to buy (you might have guessed that I LOVE Amazon, it's just that I have soooo many vouchers for them) or go and check out some related posts if you really wanted to. For now though I am off to bed to see the wooden Indians (a phrase my Grandmother used to say when putting us to bed) and hope that Mr Insomnia doesn't pay a visit - I NEED SLEEP!!

Here are some things you might like from Amazon

 

What's your favorite thing to shop for?

Related Posts

Thursday, 26 April 2012

Learning to Live With CFS: New CFS Brain Study Shows Reduced Activity

I have been catching up on the blogs that I subscribe to and I came across this interesting study. Pay particular attention to the motivational aspect - I at least know I'm not going crazy or am lazy, it's actually a blood flow issue (it's obviously a lot more complicated than that but in layman's terms...). 

Learning to Live With CFS: New CFS Brain Study Shows Reduced Activity

Wednesday, 25 April 2012

Is Dr House a Kindred Spirit? Rehab: Day 23.

My new addiction is House, M.D, he is my DVT kindred spirit and knows what it's like to experience the pain and muscle death that goes with it. The stabbing pains that I get seem to be coming back with greater intensity and frequency. I don't if that's because of my increased mobility or whether it's because the muscle is dying or if it's because the clot is moving around or if it's because of some increased swelling but on the other hand it could be something completely different.

I managed to walk about 2 miles today walking mainly around town. I got a text from a friend this morning saying she was stopping in the area overnight and could we meet up, well conveniently her train got in as I finished work so we went for lunch. I also managed to get a free lunch - hooray - as I paid for it with vouchers I got from completing some surveys.

I also got my M.E referral letter through today which explained that I'm now on the waiting list to see a specialist at one of their clinics. They didn't say how long it would be - I reckon at least 6 months - but that I would be getting some more details in the post soon enough. 

Work is going pretty well so far, I'll be back on the phones tomorrow talking to those wonderful customers who do insist on calling me. I had a meeting today to run through everything so far and managed to gross out my supervisor by explaining how they would clean out the vein if that's the next step - his face was priceless!

Have you ever managed to gross a boss out? Leave a comment so we can all have a good laugh!

Anyway, I better get some sleep. The insomnia is still being a bitch and not playing nice at the moment ... sigh... It's horrible being knackered and not being able to sleep. The only good thing that's keeping me going for tomorrow is that I get to wear black jogging bottoms to work - yay! My leg swells up too much for my work trousers so my left side gets very uncomfortable while I'm constantly pulling up the right side of my clothes as they're too big, hey-ho that's life though.

Anyway, sleep. Enjoy the links and go exploring on amazon, it's fun!

Things you (I) might like! Have FUN!

  


Related Posts


Tuesday, 24 April 2012

Blood Clots and Factor 5 Leiden/ Rehab: Day 22

I had my scan today and from what I gather it's not looking too great at the moment. The main vein is still completely blocked from my calf to up my hip. The body will end up making new veins to cope with the loss but there's also the possibility of having muscle death in the surrounding areas - I'm not too found of being like Dr. House.

Work was pretty cool, I'm still catching up on loads of paper work, comms and product knowledge but I should be on the phones tomorrow for an hour or so just so that I can back in the game. I also found out that my holidays are all still booked so I can spend my birthday week day in Penzance with the family.

Rehab today has been walking 1.9 miles. I was planning on doing Jillian's 30 Day Shred but I'm still sore from Sunday's workout and my lats are sore from walking around on crutches - I guess it's an exercise in its own right. I think tomorrow I'll be up to scratch for another Jillian session.

My fatigue is pretty bad at the moment. I think it's because I'm doing a lot more activity than I'm used to over the last 3 months. I've been struggling to get up early but also struggling to get to bed on time, the insomnia is acting up again and I really need to get a handle on it otherwise I'll have some serious issues when I up my hours next week.

How do you deal with your insomnia episodes?

Related Posts







Monday, 23 April 2012

Do not approach unless you have chocolate! Rehab: Day 21

Pain has been a bit of an issue today, my leg has been swollen and sore and my joint have been exactly the same because of the crappy weather. I hate being cold and wet as it make everything so much worse. I did manage to walk 1.5 miles today though and had a fairly productive day at work.

I really need to get organized during my day, at the moment it's a case of going to work and then coming home and doing whatever. I think with all of the writing that I need to be doing I need to dedicate a certain amount of time to each project so that I'm not wasting my time.

Tomorrow I've got a scan at the hospital to see how my blood clot is doing. I'm hoping that it has cleared a little bit, although with the pain that I've been getting I'm really not sure what's going on at the moment. Does anyone know if you get pain when a clot is being broken down? This is my first major internal clot so I have no idea what it's supposed to feel like while it's healing.

Anyway, I better get to bed with the hot water bottle. Even though I slept without the compression stockings last night they will be staying on tonight because of the cold and damp. I'm thinking hot water bottle, dressing gown, duvet and blankets for warmth tonight - over board? I think not, it's freezing here at the moment!


What is Venous Insufficiency of the Legs

Introduction and How the Veins Work

Showing correct valve flow             
Venous Insufficiency occurs when the walls or valves in a vein do not work as efficiently which means that blood is unable to return to the heart and blood may pool in the lower limbs. 

There are three kinds of veins: superficial veins, which lie close to the skin; deep veins, which lie in groups of muscles; and perforating veins, which connect the superficial veins to the deeps veins.

When you are standing up the blood in your veins must fight against gravity to return to your heart. In order for the blood to return the leg muscles squeeze the deep veins of your legs and feet to move the blood back to the heart. The valves (as shown above) keep the blood flowing in one direction, when the vein is squeezed the valves open to allow the blood to flow through and when the muscle relaxes the vein the valves close to prevent the blood from flowing in reverse. This entire process is called the venous pump.

What can Cause  Damage

If you are susceptible or have existing conditions then even sitting for long periods of time can stretch the vein walls as the pressure builds causing them to weaken and damage the valves. Other risk factors include:
  • Aging
  • Reduced mobility
  • Blood clots known as deep vein thrombosis
  • Pelvic tumors
  • Vascular malformations
  • Being overweight
  • Pregnancy
  • Sedentary lifestyle
  • Smoking
  • There are also unknown reasons too

What are the Symptoms and Complications

  • Swelling and tightness
  • Heaviness, tired, restless or achy
  • Pain while walking or shortly after stopping
  • Rashes, redness and sores on the skin
  • Itchy and flaking skin on legs and feet
  • New varicose veins

Repairing the Damage and Treatments

Like most diseases it is most treatable in its early stages. Medical professionals will prescribe a combination of treatments to help restore proper blood flow to the vein. These treatments include:
  • Compression stockings
  • Regular exercise
  • Lose weight
  • Elevate your legs when sitting and at a 6 degree angle when sleeping
  • Antibiotics to treat skin infections
  • Take care of your skin - keep it moisturized so that it doesn't crack and become susceptible to infections.
  • Blood thinners if you have blood clots
  • Sclerotherapy - by injecting a solution in small varicose veins they will collapse and disappear which can eliminate pain and discomfort and prevent further complications such as ulcers.
  • Endovenous thermal ablation - a laser or high-frequency radio wave to create heat is used on a vein and by doing so causes the vessel to close up. It is non-invasive and has a quick recover time for the patient.
  • Ligation - a vein is cut and tied off but requires surgery
  • Stripping - the larger veins are remove through two small incisions and requires up to 10 days recovery after surgery.
  • Microincision/ambulatory phlebectomy - small incisions are made over the veins and a phlebectomy hook removes the vein.
  • Vein bypass - a healthy vein transplanted from another area of the body is used to reroute blood from the affected area. 
Ideally the problem will be caught in its early stages and surgery would not be necessary. However, if previous treatments have failed the opting for a surgical procedure can really improve the quality of life for a patient.

Have you ever suffered from, or are suffering from venous insufficiency? Leave me a comment with your experiences.

Useful Books and Aids




Related Posts

Sunday, 22 April 2012

Rehab: Day 20

I managed to get another session of Jillian's 30 Day Shred done today. I was able to be a bit more 'aggressive' but I also started to get a bit of pain behind my left knee so I had to scale the lower body movements down quite a bit.

I'm back to work tomorrow 3 hours a day for the next week as part of my phased return to work, which is good because I could really use the money right now. Although sick pay is ok in an emergency it certainly can't get the bills paid.

Lupus Foundation for America: A Helping Hand

Introduction to the Lupus Foundation of America

The Lupus Foundation for America (LFA) is a wonderful society that provides continuing support for Lupus patients. I came across this video on YouTube and just wanted to share with you the good work that these people are doing.

In a previous post, Living with Lupus, I spoke about a girl who had been diagnosed at age 12 with the disease. Halee (the girl) and her family had been given an enormous amount of support and they had give just as much back to the foundation. 

What does the LFA actually do?

The LFA's primarily aim to improve the quality of life for Lupus patients, find a cure and to also raise awareness on the disease; their slogan is "from care to cure." The published mission objectives of the LFA are to:
  • Shine a light on this medically under-served disease
  • Accelerate the pace of medical research on lupus
  • Build support for the needs of those affected by lupus
  • Elevate lupus to a place of prominence on the nation's health care agenda.
The LFA has a fairly aggressive outreach program to raise awareness and understanding of the disease to the public. The way they do this is through:
  • National and international awareness campaigns
  • Proactive media outreach
  • Innovative online content and social networking
  • Educate policy makers on the needs of people with lupus - making it easier for lupus patients to work around their illness
  • Secure additional funds for research, education, and support services.

How does the LFA support People with Lupus?

  • Offer support groups for those who need special help
  • Provide referrals to those who need community support - becoming more involved with GPs for everyday health care needs
  • Provide access to Lupus Experts through online and local programs and events
  • Social networks to share experiences
As you can see the LFA is doing a fantastic job at making its research findings into accessible material for patients and the public. By continuing this work we can raise awareness of Lupus and help to find a cure for this disease.

How can I help?

Lupus charities, foundations and research facilities all over the world need continuos sources of funding to carry on their work so any additional funds is a bonus. There are many ways that you can help, the LFA have a selection of activities such as Walk for Lupus, raising money online, purchasing their merchandise to help spread awareness of Lupus and participating in clinical trials if possible. So get some friends together and go spread the word.

Do you know anyone who is suffering from Lupus or other invisible illness, what have you done to help them or raise awareness of their disease? 

Rehab: Day 19

I didn't really get up to much today. I went shopping in the evening and only managed to walk 0.37 miles. I've been getting some really bad pain in my ankle, calf and knee so when I have my scan on Tuesday I want them to look at the veins and arteries just to check if there are any other clots there, old or new. Something isn't right at the moment and the pain is getting so bad it's breaking through the Tramodol barrier.

I'll be resting up nice and easy tomorrow probably with some cycling or some Jillian thrown in there whilst I'm sat on my exercise ball.

Saturday, 21 April 2012

What is Post-Thrombotic Syndrome?

CC courtesy of Mr Thinktank, Flickr
Post-thrombotic syndrome is a condition that is often experienced by patients who have experienced a deep vein thrombosis. At least 50% of DVT sufferers will go on to experience leg pain, swelling, fatigue and sometimes skin changes including open sores and ulcers.

PTS is caused by the vein becoming damaged due to the clot. Quite often what will happen is that the liver will send out a series of enzymes to break down the clot but the body will also convert the clot into scar tissue which ends up narrowing the vein causing these problems. Contrary to popular beliefs the anticoagulants like warfarin that the patients are given do not break down the clots they merely serve to thin the blood to prevent further clotting.

However, the Society of Interventional Radiologists are looking at minimally invasive treatments to improve blood flow and quality of life for patients who suffer from post-thrombotic syndrome. In a recent study over 93% of patients who had undergone the procedures had a significantly improved symptoms and quality of life.

The procedures that they are investigating include angioplasty which is the insertion of a small balloon in the blood vessel under X-ray guidance to the blockage. The balloon is then inflated to open the blood vessel. Another procedure used was stenting, which is the insertion of a tiny mesh tube to hold the vessel open and used drugs that are inserted through a catheter in the blood vessel to dissolve the clot and restore blood flow (also known as thrombolytic therapy).

Although these procedures are not common place at the moment we can hope that as awareness of PTS is increased more doctors and specialists will recommend these procedures to PTS patients so improve their quality of life.

What are your views on these procedures?

Related posts:

Friday, 20 April 2012

Rehab: Day 18

I am so ridiculously tired today I'm going to have to sleep for about 12 hours. I managed to make it into work for all of 3 hours and I basically got paid to sit around - not bad for the first day back. Reason being was that my systems are still disabled so I wasn't actually able to do any work so I spent the morning call listening with my team mates.

Rehab wise I've walked 1.5 miles but I'm feeling like crap! I felt really sick last night and I've got a splitting headache along with some bad pain in both legs. It's not helped by the fact that they upstairs neighbor has got his tv on so stupidly loud that I can hear what the characters are saying. If it's like this again tomorrow night I'll need to go and have words. 

Living with Lupus

Dealing with an invisible illness is very difficult, especially when people cannot immediately see what is wrong with you. On the outside you may be the picture of health but on the inside you're body is fighting a constant battle, there is pain, trauma and everyday is an emotional and physical struggle. When the public don't see these things it can often make it harder to deal with.

EverydayHealth posted a video on YouTube about Halee who is a teen living with lupus. She was diagnosed when she was only 12 years old and has since had to give up some of her favorite hobbies. Since her diagnosis Halee has been raising money for the Lupus Foundation of America to aid them in their search for a cure. EverydayHealth set out to help Halee get some of the money, raise awareness and also enable her to take up her hobbies again on her good days.

Here is the video to Halee's heart wrenching story:



Thursday, 19 April 2012

Rehab: Day 17

Today wasn't particularly exciting, I spent most of the day making phone calls chasing up sick pay, fit for work notes and prescriptions. I managed to get down the steps with only one crutch today and up the stairs without. I didn't do much today as I had a rough night with episodes of cramps in my bad leg so along with the dvt pain I've had cramp pain to contend with as well - not great for rehab.

My recovery from 30 Day Shred has been pretty quick, my upper body is only a little weak and I wasn't as tired as expected. My fatigue is taking on a deeper hold so I'm going to have to start rest more, especially as I am going back to work tomorrow. Although it is only for 3 hours I'm fairly sure it is going to take it out of me by the time I get home.

What are your favorite rest activities? Movies, reading, painting, music? Let me know in the comments.

Wednesday, 18 April 2012

Rehab: Day 16

Today has certainly been interesting. For starters I didn't get my sick pay!! Hello, how am I supposed to live? And to top it all off I couldn't get hold of my boss today, no one would pick up the phone. Ha, it's just like calling the tax office. My good leg has also been playing up today but I think it's just stiffness.

Good things that happened today:

  • I didn't sleep this afternoon even though I really, really wanted to
  • I'm on 120mg in the morning and 80mg at night for my clexane injections
  • I applied for an overdraft (see above)
  • I paid off some of my credit card (the bill was due)
  • I shopped around for a new credit card (the interest is killing me at the moment)
  • I did a film review over at Pawman's Reviews
  • I managed to wash my hair - believe me, this is a big deal when you have long hair and no energy
Rehab wise I managed to do a seriously modified version of Jillian Michaels 30 Day Shred and now my arms feel like jelly. It's good jelly though, it was nice to workout again even though I feel really weak and a bit disappointed. My disappointment is completely unrealistic though, there's no way I could go and lift a 30kg bar now, I was struggling with just 2.5kg hand weights. I'm sure my strength will return pretty quickly though.

Here's a little link for the workout I'm doing:



I've done it before and it's pretty good. If you haven't done it I would recommend getting the dvd, after all it's only 30 days and £5, what have you got to lose (except for the money, or if you're like me some extra weight)?

If you have done it
  • What are your thoughts on it?
  • How often did you do it?
  • What were your results?
  • Did you change your eating as well or just do the workouts?

Rehab: Day 15

Have you ever had a lesson in Japanese? That's what I experienced yesterday and it was pretty awesome! Sensei Terauchi flew over from Japan and taught our karate class today. He spoke very little English and we only spoke 'karate speak', however, the language barrier didn't seem to be too much of an issue and we all had fun. I obviously didn't train yesterday (I don't want to risk anything until I've had my scan at the start of May) but it was great to be back in the dojo watching people training - I picked up a lot of tips and new training techniques and can't wait to test them out.

You know what was also nice? The fact that I have clearly been missed by the group. Only Sensei Simon knew that I was going but as soon as I hobbled in (still on 2 crutches) I had hugs and kisses all round and a lot of concerned questions. I think in a couple of weeks when I'm down to one crutch (or maybe none) I'll pop into one of the dojos and watch a couple of sessions before starting my own training.

Rehab wasn't anything exciting. I did quite a few errands and walked to the post office and back (in torrential rain!) and driving to the karate class (even though it was only 10 minutes down the road) has really knocked me out, I'm absolutely knackered!

I've got a call from my ocupational therapist in a couple of hours to discuss my return to work and I'm waiting for the doctor to call me back because I need her to sign a form. If all goes to plan this week I'll be going back to work on Friday :-)

Just out of interest, what's everyones favourite exercise or sport? A few of mine are karate, running (as soon as I've dropped a bit of weight and get healthier), weight training, cardio circuits and yoga.

Tuesday, 17 April 2012

Rehab: Day 14

Pretty good day yesterday, I popped into work to get a load of paper work done. If my meeting on Wednesday goes well I should be returning to work part-time as of Friday. My bosses plan is to do 3 hours a day for one week, 4 hours per day the next etc until up back up to normal hours, now unless my OT (occupational therapist) says anything different that's the plan.

I'm absolutely knackered though, I walked 1.5 miles through the wonderful sun and parks from the bus stop and back. I think my insomnia should start to resolve itself again once I start going to work again as I'll be so tired that I'll just have to sleep, there wont be any doubt about it!

My clexane injections are giving me a bit of jip and the moment but it's because of a really good reason: I've lost weight. As you know (if you've been reading these posts) the injection has to be done in the fat on my lower tummy. Now, the problem I'm having is that my tummy is shrinking and I can't grab as much fat as before, this is causing a lot more bruising than normal and making it more painful as the needle sometimes goes into the muscle depending on the sight: that hurts sooooo much it really makes my eyes water and foul noises come out my mouth. Luckily I'm now decreasing my dosage because of the weight loss - yay!! Today I'm on 120mg in the morning and 100 mg at night, then 120mg in the morning and 80mg at night for 10 days then I'm on 100mg until they switch me over to Warfarin. I'm 'looking forward' to the 100mg, they should be easier to do compared to the 150mg they had me on initial and hopefully there wont be as much, bleed, bruising and pain.

I had a pretty rough night though. I had to put the compression stockings on again as my legs we killing me and I think tonight I'll need some more elevation. Even though the doc said that I can remove them at night I'm going to keep wearing them until the vein has recovered a bit more - I'm suffering from veinous insufficiency at the moment which means that the valves are damaged and don't work properly, but I'll be putting a separate post up about that as it can get a little complicated and is fairly interesting for health/biology nerds.

Anyway, that's enough for now I've got to get ready for Terauchi Sensei's course. I'm not training as I'm still too weak but just going to show my face and meet up with everyone.

Monday, 16 April 2012

Rehab: Day 13

So far this week I haven't really done any proper rehab. I've had one day so far that I actually set aside some time to focus on rehab. Yesterday was a very lazy day, we spent the day tidying and I managed to get in some squats (15), push ups (15), and crunches, but that was it, no walking, nothing.

This week I'm going to start returning to work so the frequency of posts will probably drop down to one a day. Don't worry though, I've got plenty of interesting topic that I want to discuss and plenty of hospital appointments and procedures to go through so I'll make sure to keep you entertained.

Sunday, 15 April 2012

What is Heterozygous Factor V(5) Leiden Mutation?





CC courtesy of Valerie Everett, Flickr
As promised I'm going to try and explain what this genetic mutation is. Before I can explain what is actually 'wrong' with me I'll need to give you all some background information - I'm sure you remember you school days biology.

How Clotting Works - Background Information

The body's clotting mechanism is triggered when there is trauma to a blood vessel. The liver will make and release a variety of clotting factors into the blood stream along with platelets from bone marrow (made and released in the pelvis and breast bone). These clotting factors and platelets will then travel to the the damaged area where they will interact with each other and form a blood clot to repair the wall of the blood vessel. Once the damage is repaired the liver will make and release anticoagulants (clot busting enzymes) that travel to the clot, bind to it, break it down (dissolve it) and normal blood flow returns. 

What is Heterozygous FVL?

The naturally occurring anticoagulant Protein C works by attaching to a receptor on the surface of one of the clotting factors known as Factor V (there are 13 in total); this is part of the dissolving processes of a blood clot. The FVL mutation is a genetic condition associated with an alteration of the receptor on the surface of Factor V meaning it is relatively resistant to the effects of Protein C: it takes longer to break down the blood clot - imagine trying to put to bits of jigsaw together that don't quite match.
FVL was discovered in the 1990's in a town called Leiden in Holland. Heterozygous means that there is 1 inherited abnormal gene from 1 parent and one normal gene from the other. This form of FVL is seen in 5-8% of the UK population. It is inherited in a autosomal dominant fashion meaning that your own children will have a 50% chance of having the abnormality.

What are the Risks?

Being heterozygous for FVL increases the risk of blood clots by 5-fold, for women on the oral contraceptive that increases to 34-fold. The greatest risk of a DVT is after surgery and long haul flights.

What is the Treatment?

Compression stocking if you've already had a DVT, you're going in for surgery, or if you're going on a long haul flight. You may also need to take daily doses of an anticoagulant, which slows down the body's ability to clot. I personally need to take Warfarin for the rest of my life as well due to my previous medical history.

So there we go, as promised, my explanation of Heterozygous Factor V Leiden Mutation. I hope your brains haven't turned to mush. If you have any questions leave me a comment and I'll answer as best I can. 


Delicious Pies

CC courtesy of Rakka, Flickr
I was speaking to my sister last night and she said that there was a lack of pies on the site! So I thought I'd get you a list of delicious (mainly Paleo) pies ranging from savory to sweet. 

  • Here's the link to a delicious Paleo Pie by Primal Provenance. It's a yummy stewed steak with vegetables. There's a list of ingredients and instructions on how to make it.
  • This one is a tasty apple and cranberry pie by The Sassy Apron. They provide easy instructions and ingredients lists to make it.
  • Mark's Daily Apple provides lots of paleo tips and this particular recipe is for the Ultimate Walnut Pie. I'm not normally one for nuts but this one looks pretty good.
  • If you love chocolate you're going to love the Chocolate Mousse Pie from Fast Paleo.
Here are some not so good for you pies but are delicious anyway.
  • Alan's Kitchen has an entire site dedicated to delicious dessert pies so head on over there for some noms.
  • If you live in the country and have access to rabbit you should head on over to Vintage Hearth for this tasty recipe.
  • A classic shepherd's pie has been shared by Crazy Horse Ghost.
These tasty pies should keep you busy for a little while. If you have any recipes you want to share email me or leave a comment.   

The Importance of Drinking Water

CC courtesy of tim.perdue, Flickr
Seeing as the human body is at least 60% water and we can't survive for more than about 3 days without water it is vital to keep hydrated to avoid death and other complications.

Guidelines state that we should be drinking about 8 glasses (1.5l) of water a day for a normal lifestyle - more if you're active. But what are the benefits for drinking water and not other beverages?

Biological Functions

Water is the medium in which blood and lymph functions happen - carrying nutrients and oxygen, removing toxins, and other cellular activity.

Joints and eyes need lubricant and water pays a critical role in this. Water also holds the enzymes (saliva) that breaks down food at first point of contact. Your organs are also surrounded by water, it helps to protect them from injury. 

The most obvious biological function of water is controlling temperature; when you're hot you sweat, moisture is released onto your skin and evaporates, hence the cooling effect. 

Prevents Dehydration

If you're thirsty or if you urine is dark you are dehydrated. You lose water through urination, respiration, metabolism and sweating. As you become dehydrated you create imbalances with mineral and your cell function diminishes.

Complications of dehydration include headaches, fatigue, dizziness, mental confusion, dry mouth, constipation, increased heart rate, increased respiration (breathing), and even death. If that last complication doesn't make you reach for a glass of water then you should probably take a look at your health priorities. 

Fiber Control

If your diet is high in fiber (which it should be) you are going to need water to move it through your system; if there is a lack of water you will experience constipation. Fiber consists of all the bits of plant food that the body cannot digest and is vital in removing wastes and toxins.

Eliminating Toxins

Toxins are normally removed from the body via the kidneys. The kidneys excrete the harmful compounds through urine, stools, and even sweat: all require water. If the kidneys do not have enough water to function some of these detoxification duties are passed on to the liver. However, when the liver is stressed it cannot metabolize fat as effectively so the fat is just stored in the body - this is not good for weight loss, drink your water people!

Amounts and Alternative Sources

The recommend water intake is 1.5-2l based on an average lifestyle however, these requirements may change if you exercise more, are in a hot environment, are pregnant or breast-feeding, or if you are ill.

There are also other beverages that can contribute to your daily intake of water. These include milk, tea, juice and soda. However, these will often contain caffeine and unnecessary calories and let's face it, THERE IS NO ALTERNATIVE TO WATER. It is one of the healthiest things you can give your body and will make you feel awesome.

I've also found some resources that might be useful for you if you want to do some more research:

Your Body's Many Cries for Water: You're Not Sick; You're Thirsty: Don't Treat Thirst with Medications
The Water Secret: The Cellular Breakthrough to Look and Feel 10 Years Younger
The Complete Guide to Sports Nutrition (Complete Guides)

Rehab: Day12

Another day of being absolutely shattered. Rehab consisted of driving to Tesco and replacing the microwave and getting a parking ticket - I was 10 minutes late after having a 'funny turn' in Tesco so I'm going to appeal that ticket.

I feel like I didn't really do anything yesterday so I'm going to spend today really getting my act together and getting some serious work done. 

Saturday, 14 April 2012

Rehab: Day 11

CC courtesy of Denis Collette, Flickr
I promise I will writing a post about what happened at the hospital and an in-depth explanation of the genetic mutation. I promise, I promise, I promise! My excuse is that I'm tired when I get round to blogging.

On the other hand, rehab eventually went pretty well yesterday. I had to really force myself to get up and just start it, I've just been exhausted in the last couple of days. I haven't been sleeping properly, insomnia is starting to catch up with me along with a couple of early starts for the hospital etc. 

Anyway, enough of the excuses. Let's take a look at what I managed to do. Well, for starters I can tell that I've made quite a few improvements since last week.
  • 23 minutes on the bike at level 2, 6.7km. My speed and endurance have increased and I can feel the mobility starting to return in my knee when I'm just wandering around.
  • Ab 10 - I'm starting to see some definition on my obliques and I can tell that I'm so much stronger as I've got a better range of motion on the exercises and I can do more repetitions.
  • 15 squats - 5 more than last week and a better range of motion.
  • 15 push ups - still on my knees, but 5 more than last week. I'm also getting some upper body strength from using the crutches as I have to support my left leg quite a bit after a while.
  • Stretching - I did the best back stretch earlier, in yoga it's called the plough pose (see below). I also started to do some more intensive hamstring and calf stretches and began work on my front and side splits regime but I'll have to take it very slowly with that because the vein can be quite tender after cycling.
CC courtesy of yogamama.co.uk, Flickr
Last night I tried sleeping without my compression stockings on as I got the all clear to try it out from me hematologist. It was odd. I had got so used to being in these stockings for 23 hours a day that to have them off at night felt strange and rather free and airy. I was also quite cold though as they are great insulators - useful when I feel the cold so badly. I woke up still feeling like I was hit by a bus but the swelling was surprisingly little as I'm still sleeping with my leg elevated.  

I also had a bit of a break through! I managed to do my last 3 injection myself!! Seeing as the other half will be going back to work next week he wont be able to do them so I finally bit the bullet and did it. My hematologist also reduced my injection amount from 120mg to 100mg because I've lost weight - yay go me! 

So, what I want to know is if anyone else is going through some form of rehab at the moment or if you've had to go through some tough rehab in the past. Leave a comment below to let me know your experiences, support can be a great healer.



Medical Device Hacks May Kill

Cc courtesy of Brookhaven National Laboratory, Flickr
Yep, you read that title right! I was skimming through the BBC news health section and came across an article about the dangers of wireless medical devices. Prof Kevin Fu, a computer scientist of the University of Massachusetts Amherst has found that many 'preventable deaths' have occurred simply because the coding in the devices can become corrupt because they are not strictly checked, they are also not encrypted which leads us on to the research of Barnaby Jack of the security software firm McAfee.

Mr Jack has shown that the open radio communication poses some horrendous risks. In just two weeks he was able to hijack a well know insulin pump and turn it into an attack machine by overriding the device and forcing lethal doses of insulin from the pump. A tool could be made to identify people who had these machines and turn them into death machines simply through radio communication.

So be warned if you have any form of medical device that transmits data wirelessly. If you happen to piss of a nerd they could turn your life saving device into your own death sentence. The Medical and Healthcare products Regulatory Agency informed the BBC that they monitor all devices to insure the safety of the patients and that the illegal use of these devices is 'extremely remote.' If it was me though I'd still be concerned; I guess when you understand even just a bit of code you can see how they would be able to manipulate the devices, and to be honest it scares me.

What are your thoughts on this?

Friday, 13 April 2012

Home workout vs the gym

CC courtesy of The U.S Army, Flickr
Today you've probably caught a glimpse of yourself in the mirror and did not like what you saw. That's why you're here on the internet trying to find the best option out there to lose the weight. I can tell you from experience that your diet will be 90% of your weight loss and the other 10% will be exercise. Of course, in order to keep the weight off you'll have to overhaul your lifestyle so that you're constantly eating well and looking after yourself and not go back to the foods and sedentary that got you here in the first place.

This post isn't about diet (that'll be covered sometime later) but it's about what you can be doing to get yourself active. You're probably also wondering whether you'll have the greatest results at a gym or at home. Well, I can't give you a yes or no style answer to that as there are quite a few things to consider:
  1. Equipment: do you have any equipment at home? Even if you don't there are plenty of body weight exercises you can be doing. You can also make your own equipment at home too (a more detailed post on that will be coming soon), for example you can fill up water bottles with water or other substances (sand or gravel?) to create your own set of dumbbells. If you've got a bit of spare cash or use Craigslist you can pick up some cheap weights. What about cardio? You can get outside and walk or jog, you can skip in your front room or do intervals. Of course, the gym has all of this readily available to you often 24/7.
  2. Time: do you have the time to get to the gym? If you do that's great. If you don't then workout at home where you can keep an eye on the kids or whatever. 
  3. Cost: can you afford £30 a month (or thereabouts) membership to a gym? That's £360 a year, every year. You can easily pick up some decent equipment for £100 or fewer and that's with you for life or until you've used it so much it doesn't function any more.
  4. Socializing: are you a social butterfly or do you prefer to keep you exercise habits to yourself? Going to the gym can be a great place to meet like minded people. If, however, you'd rather keep to yourself then you might be better off working out at home, at a far away gym where people don't know you, or maybe in the dead of night when most people are asleep.
  5. Do you need a trainer?: if you're completely new to exercise you might benefit from getting a personal trainer or taking some classes to show you the ropes. On the other hand, there are fitness videos that will guide you through each move but it would be best to workout with a buddy who can make sure you're doing it right. Either way it's up to you.
So let's just quickly list the pros and cons of each:

Gym Pros

  • All your equipment is there
  • You can potentially have access 24/7
  • Access to personal trainers
  • Some gyms offer alternative facilitates like saunas for you to relax in
  • You can meet other people

Gym Cons

  • It's expensive
  • It takes up a lot of time
  • They can be dirty if not kept clean by the other users
  • They can be intimidating

Home Pros

  • Workout in the comfort of your own home
  • 24/7 access
  • Can do a wide variety of exercises
  • You wont feel insecure as it's your home
  • It's your equipment and not covered in germs
  • You don't even need equipment, you can just use body weight

Home Cons

  • You may have to buy some equipment
  • You don't have immediate access to any professionals
  • There's very little social aspect
So there we go, all the possible pros and cons of home workouts vs the gym. I personally love working out at home. I have built up quite a bit of equipment including a stationary bike, weights, pull up bar, push ups stands, stability ball, resistance bands, different types of mats as well as all my martial arts equipment.

So where's your favorite place to workout?

Rehab: Day 10

CC courtesy of net_efekt, flickr
Yesterday was yet another hospital visit. My rehab involved walking a couple of miles and getting some long needed sunshine.

I do have some brilliant news though!!!

I HAVE AN ANSWER!!!!!

After 4 years of searching we're finally starting to get somewhere and it only involved nearly dying to get there. Although on reflection I'd prefer the near death experience and get some treatment than feeling like crap for the rest of my life.

So, the answer to some of my problems is a genetic mutation on a chromosome called Heterozygous Factor V (5) Leiden Mutation - bit of a mouthful huh? It basically means that my body has issues breaking down clots. 

Since I'm too tired from celebrating, being stabbed (injections and yet more blood tests), and walking around I'll be writing another post later on with a lot more information - how I got it, how do I treat it etc.

Catch you people later - and go celebrate for all the good things in life!! 

Thursday, 12 April 2012

Rehab: Day 9

CC courtesy of Tayrawr Fortune, Flickr
This is how my stomach feels. The bruises aren't that dark, they are still light red - yellow but the skin underneath is so sore. I'm rapidly running out of places to inject, I might have to start using my inner thighs but that is a risk for the clots that are there - what would happen if I nicked the major vein in my groin?

My planned rehab for yesterday just didn't happen because I felt so rough. Then pain was starting to come back in my left leg so I have returned to my stated dose of pain meds, clearly now is not the time to be reducing. I did, however, end up going out for an impromptu lunch with the other half and his uncle which was nice. I ended up having a small walk whilst we were looking for somewhere to eat so I don't feel that guilty about missing some rehab.

I'm going to the hematologist at the hospital today for my pre-op consultation. I really don't want them to take out the filter, I feel so much safer knowing that there is something preventing my death if a bit of clot comes off. I also need to talk to the about the heavy periods and sore stomach - there has to be a solution to these, I can't go on forever like it, it's just not possible.

I'll provide an update with the hospital, returning to work, and how my rehab went either later or most likely tomorrow.

Have a great day!