Pheochromocytomas - what are they and what affect do they have on people?

Those that have known me for a long time will have seen a change in my behaviour from when I was off ill last year, we all put this down to me having to change my medication and then struggling to find the right ones to work for me, even my doctor has got frustrated as I have continously told her that the tablets are not working.

After talking to other VHL sufferers, I now have a better understanding of what is happening with me mentally and why, so I thought what better way to try and explain it to those who have never heard of VHL or understand what tumors in certain parts of your body can do or change a person.

There is a website out there in the tinternet called VHL Family Alliance and they have just carried out a survey on this particular type of tumor, the write up is very spooky as so much of it rings true with me, the next few paragraphs are extracts from the report and detail exactly what I have and am experiencing.

Delayed Diagnosis Hurts:
During the time people were waiting for their diagnosis, people reported many serious issues. First, of course, their symptoms worsened, making it difficult to concentrate, undermining their energy and stamina. As the tumors grew, serious emotional fragility developed, sometimes resulting in explosive temper which caused problems at work and in relationships. Even worse, the fact that their doctors did not believe they were sick, or accused them of using drugs, or of hypochondria or other psychiatric disorders had a severe impact on their feelings of self-worth and frequently led to feelings of helplessness and hopelessness. Many said they felt they had lost control of their lives. People with such advanced tumors often had some of the symptoms even after the tumor was removed.

No one believed I was sick:
As people read our checklist of symptoms that might occur, several were surprised to realize they could be indicative of a pheo. Some said they were embarrassed to discuss some of these symptoms with their doctor, not thinking they were related: heavy sweating, constipation or chronic diarrhea, nervous tremors or tics, anxiety or feelings of doom. Dizziness, fatigue, and headaches were usually reported.

Heart Disease:
The chemicals generated by the pheo may cause the heart to race, the blood pressure to become erratic, nervous tics, and/or moderate to severe headaches, all of which might raise concerns of a heart attack or stroke

Psychological Issues:
When patients report anxiety, panic attacks, feelings of doom, fatigue, sometimes alternating with spurts of boundless energy, and mood swings for no good reason, it is logical to think this person is under stress at home, work or school, or has some more serious psychological issue going on. Many people were referred for psychiatric counseling and/or prescribed drugs.

Comments:

• Severe emotional trauma within the family unit by constant disregard by health professionals and being made to feel like idiots when clearly something serious was occurring.
• The first pheo took 3 years to find. I thought I had major psychiatric issues during that time.
• If the doctors tell you often enough that you’re crazy, you begin to believe it. Certainly my wife believed them and left with the kids.
• I found it difficult to control my anger when my adrenaline spiked (recognized it after diagnosis)
• Anxiety so bad that at one time I was suicidal and even self-medicated with alcohol and felt better when I did this. As soon as I got sober, the issues came back.

I recognise so much from those paragraphs above and even more from the comments some of the people on the Survey made and even though I am really scared, I am also really relieved that I do have something growing inside me that is causing all these issues and it can be taken away from me.

I have two hospital appointments to go to over the next couple of weeks, 29th Sept and 3rd Oct, hopefully by then I will have answers and a plan of action on how we are going to tackle this and make me better, my GP is still not convinced these Pheos are active but I know my mind and body better than anyone else and I know something is not right and hasn't been for ages.

During this time I have also lost and upset some very dear friends because I could not control my emotions, temper or anxiety, I just wish I had known there was a reason behind it as I might have been able to explain to them better why I was being so unreasonable.

I still live in hope,
Shellie B

If you want to read the full survey it can be found here.

MOT for 5th Sept 2011

Well I decided that as I have not attended clinic since 2008 that I had better go this year and I also wanted to meet the new clinical nurse for genetics, I even made a huge effort and did my 24hr urine sample.

Unfortunately Angel went missing on the Saturday before I was due to go to the clinic so I really didnt want to go but good friends told me that I still need to take care of myself, so I headed off and when I had got halfway to Oxford I realised I had left my 24hr urine sample at home!

It took them about 10 minutes to be able to find a good enough vein in my arm to be able to inject the dye, once the MRI was over I headed to outpatients to see the Genetics Doctor and then the eye specialist.  Dr Halliday did not seem too worried about things and informed me they were having a meeting about the scans on Thursday, 8th Sept and that they would write to me with the results in about 2-3 weeks time.  My eyes were all ok but they want to take a photograph of my left eye which is the one I had the problems with earlier this year.

So I headed off home, all anxious, as I just wanted to go searching for Angel.  Thursday came round pretty quickly and I was in London attending all day meetings, so it wasnt until I was on the train back home that I saw I had three missed calls with messages, they were from the hospital, my heart sank as they have never called me about my results before, I also had a missed call from my GP, wow I was popular!

So my VHL has decided its been a bit neglected and wants some attention, its very kindly given me some extra tumors to think about, 1 in my pancreas and 1 on each adrenal gland.  I am not very sure what this means but all I know is that I have to do a further two 24 hr urine samples and am being referred to two different consultants.

In a way I am very relieved as I have not been feeling well for a while and started to feel like I was just becoming a lazy old lady, who just moaned about being stressed and down all the time, with no willpower but now I know I have these extra lumps, it could be them that are making me feel how I am.

All there is left for me to do now is play the waiting game and see what happens next.......

Shellie B xxx

Tribunal Decision

Well the day finally came, my stress levels had gone out the roof again and I drove to the Benefits Tribunal feeling sick, shaking and wanting a big hole to swallow me up and take me to somewhere peaceful, full of love and where you dont get judged.

I sat outside nervously waiting for them to come and get me, they had tried to call me in the morning so I was even more anxious but as soon as I walked in they told me that the Department were wrong in their decision and they believed that I was entitled to Employment and Support Allowance (ESA), that was why they had tried to call.  They had rescored me 18 points instead of the zero the useless doctor who I had to see awarded me at the medical, you have to score at least 15 to be entitled to this benefit.

I am so glad I stayed strong and fought this to the end, imagine those that just give up and dont want the hassle, what a huge waste of stress it has caused, let a lone the cost to them for taking it this far, below is the revised score they gave me:

• 2 (e) Cannot stand for more than 30 minutes, even if free to move around, before needing to sit down = 6 points
• 3 (c) Cannot bend, kneel or squat, as if to pick up a light object off the floor and straighten up again without the help of another person = 6 points
• 16 (d) Cannot, due to cognitive impairment or a severe disorder of mood or behaviour, initiate or sustain personal action without requiring frequent verbal prompting given by another person in the claimant's presence = 6 points

So Dr Michael Kamburov (Approved Disability Analyst) who scored me zero after my medical exam but was more interested in getting home as it was carried out on a Sunday and who I could not even understand half the time and Sarah Mitchell in the Jobcentre Plus who reviewed my appeal, I think you need further job training or maybe a change of career, how many other people have you put through this meaningless act just for it to be overturned, mine was overturned without them even questioning me or even before they saw me.

So this means I dont have to pay any of my benefits back and I can continue looking forward to the future instead of trying to sort out the past, thank you to all my lovely friends who have supported me and helped me get through this, you have all been and are so crucial in my recovery.

Shellie B xxx

How did I manage to reach this milestone?

For those that have followed my blog from the start, you will already know that I suffer very badly with depression, got in a rut of sitting around and not going out and losing all interest in looking after myself, which has then resulted with problems with my feet/ankles/back and putting on over 5 stone of weight.  Even with all this going on I have reached a very important milestone in my life, with just the help of some wonderful friends and no interaction with my family.

The 29th July 2010 was the day that I had my last drinking binge which then resulted in a drug overdose, it made me look at myself and ask what the hell I was doing.  It has been a hard struggle to not drink but I just knew if I thought I could sneak in a glass of wine one evening that it would not end there, so I banned myself from buying any alcohol, unless I was out socially and knew that I would be coming home to no bottles anywhere in the house.

As I mentioned earlier I suffer with really bad feet/ankles and also my back so the doctor put me on repeat prescription for co-codomal, which normally knock your socks off but I got to the stage where taking 6 at a time had no effect, I told her Monday to remove these from my repeat prescription as I was misusing them.

The last month has been very emotional in work and at home, so much so that I even took 4 days holiday to completely chill and take some time for me.  My beloved Angel became very ill, the vet said there was a high probability she had FIP or Lymphoma, they wanted to do more tests but she had already had blood taken, been on a drip and I felt this was stressing her out even more.  I insisted that they give me some medication and I would treat her at home, in that time I took her to another vet who said high probability that it was Leukemia.  I was in pieces, Angel had just turned 5 and I was not ready to say goodbye to her yet but she looked so thin and slept so much.

I am pleased to say with her being fed very special food, sometimes by hand, syringing water into her little mouth and giving her lots of love she started to turn a corner.  Her temperature returned to normal, she started being more like herself and her energy came back, she is still very thin but I am still feeding her the special food to build her back up again.

I have also joined Slimming World as I just cannot seem to stay on track to lose weight and feel that having the pressure of being weighed I will be more determined to suceed, also I am very competitive so I want to be the biggest lose every week in a more positive way!  The first meeting was last Thursday, I got to the car park and nearly drove out again, I got to the door and wanted to run but I went in, I was very emotional but held it together, well that was until the very end when everyone was going and I signed up and stepped on the scales.

I am going to put in here how much I weighed as I want to be able to look back and see how I have done, the display read 15st 4.5lbs, I burst into tears with disgust at how I had left myself get to this stage, I was always around 8st before my head op and then after fluctuated between 9st & 10st.  Carrie, the Slimming World host gave me a hug and said how proud she was of me even going, I drove home in tears and told myself I did this to me and only I can change it.  I also took my measurements which goes in my progress book, again I was shocked 48" 45" 54", I only used to be a size 32A, no wonder I cant bend over with those bazookers getting in the way!!!!

We have also had more visitors coming into the garden, I think Chino has been spreading the word that it is a safe haven, luckily though they like living wild so I am happy to lend them my shed to have a nap!

We have, however, got a new addiction to our lovely family which was not planned!  I popped into Pets at Home to get Angel her special food and just saw the most adorable bunny rabbit, looking at me, all lost and lonely.  In the other enclosures there were lots of rabbits but this poor little thing was all on her own, I just knew straight away she belonged with us.

I really felt that we deserved it after the trauma of Angel and me reaching my milestone, what better way to celebrate and give a little animal a forever home, also the cats share a birthday all within 2 weeks of each other so I felt they deserved a new friend to love and play with.  I have called her Poppy as her hutch is called Poppy's Den and I think it really suits her, as the weather is so lovely I have treated her to a Rabbit run, but it is flat packed so I had better go and put it together for her so she can have a run around whilst I crochet.

Shellie B x

HM Queen's visit

Well what excitement there was at work, we knew that there was going to be a Royal visit to Bletchley Park on the 15th July 2011, where our offices are located, but we never imagined it would be the Queen herself!!!!

There was only myself and Shane in the office and as the other Account Manager over in Galway was on annual leave so I had to really beg for us to be allowed to watch her visit, we were even given flags to wave for when she arrived.

Her helicopter suddenly appeared overhead and everyone cheered, I actually started to feel quite excited and then her car appeared and I nearly peed my pants!!!!   I am not a royalist but who can say that the queen walked past where they work and waved at you???

We had to wait for her to be shown round various attractions at Bletchley Park before she made her way down to the Memorial, once we were out of the office we were not allowed back in or to wonder around the estate, so many secret service and security around made it all suddenly become clear how important her visit was.  She stopped and chatted to some of the school children that had been invited along to see the event and then walked past our offices, before stopping to meet some very important people (I was far too important for her to meet so took pictures) and then unveiled the memorial.

Excitement all over with it was time for her to head home and feed the Corgi's, besides I needed to get back to work so insisted that she left, otherwise she would have been there all day. She gave me a little wave as she walked back to the car and then sped off doing donuts and hand brake turns on the way back to the helicopter!!!!

Shellie B xxx

Shake, Rattle and Roly Poly

So today I have been to the doctors because I am thoroughly fed up of taking a step forward but then stagger back 10, I am at my wits end and do not want to end up where I was this time last year.

I went with my list:

1. Do not feel tablets are working, very irratible, mood very low and cannot see anything positive on the horizon
2. Cannot exercise due to pain in my ankles, this pain wakes me up, can hardly put any weight on them in the morning when I get out of bed, feet go numb when exercising
3. Shooting pain from my groin to the top of my foot, not all the time but when it comes on I double over in pain.
4. Cannot lose weight and am finding it really depressing

Doctors answer "we can only deal with one of those things today, which one is it?"  So I opted for trying to shed the weight as that is preventing me from exercising, restricts me at my job when I am in London and need to walk around quite a bit etc, its also making me really depressed at how fat and gross I look, I struggle sleeping as cannot get comfortable.

Doctors answer "ok lets deal with your feet"  Apparently I am putting too much pressure/strain on my tendons, my feet are red hot and inflamed around that area, I am also not wearing the right footwear, I need to be wearing supportive trainers..............I am not allowed to wear trainers to work!

Outcome, I have come away with 4 prescriptions and am now £30 worse off:

• Venlafaxine 75mg = 56 tablets
• Solpadol 30/500mg = 100 tablets
• Naproxen 500mg = 56 tablets
• Temazepam 10mg = 14 tablets

All I can say "its a good job I am not suicidal", oh hold on I am and I told her that, maybe she has had enough of hearing me winging and touching my smelly feet lol

Not sure if this is a good idea but I am currently colouring my hair, if that goes wrong then the clippers I bought for the cats are coming out, just call me Miss Stoned Baldybonce!!!!!

Shellie B xxx

Snap out of it!!!!!

Over the last few weeks I have been so down, not really knowing why, wanted attention and not go any, am hating everything in my life but as my good friend @tarquydrawers said, look where I was this time last year, so this blog is going to do that.

This time last year I was facing being out of work as my contract was not being renewed.  My happy pills were causing problems with my bladder so I was coming off them to try a different one.  My house was on the market and in a terrible state.  I was binge drinking and making myself very ill, physically and mentally, including taking overdoses when drunk as it seemed like a good idea.  My general view on life was that I was tired and wanted it all to end.

So what is different this year, I have a fabulous job for the money I wanted to be earning and am doing very well at it.  I have joined a gym and am fighting to get my fitness back and self respect.  I do not drink.  Even though I rehomed two cats last year I have given a poor lost cat a lovely new home where he is very loved by me and the girls.  I have a lodger who is friendly and seems to like me for who I am.  I have re-invented myself with a new hairstyle and a brand new tattoo.  My house is looking lovely as I redecorated last year.  I know how to crochet, cross stitch and am learning to sketch.

The negative things in my life at the moment are that I cant seem to have any willpower to diet or go to the gym regularly, I still feel very sorry for myself and demand attention, then throw a wobbly when I dont get attention and cut those people out from my life.  I have arrears on my mortgage which are being paid each month, I have trouble sleeping which makes me tired and irratible, which then makes me in a bad mood because I hate being miserable to people.  I have an addiction to Co-Codomal so much that I take 6 or 8 at a time and they have no effect on me now.

Plan of action to make more out of my life, be thankful for the roof over my head and for the unconditional love shown to me by 5 little faces every time I see them.  Research into a good diet that I can stick to, one that is not too expensive and easy to follow and prepare.  Make a rota and exercise plan for the gym.  Be thankful that I have a good job, one where I am appreciated.  Clear mortgage arrears and get IVA sorted for unsecured debt.

So from next week I will be starting my plan of action and will try not to be so hard on those around me just because I am tired and miserable.

Shellie B