Winter Approaches and so do the attacks! More health problems appearing...

As the weather has started to change so has the nature of the beast. the amount of attacks i get in a day is slowly increasing once again and i am finding less days pain free just like before. it seems to happen every year, as winter arrives so do the attacks and the pain. The low pressure fronts we get as the colder and wetter weather approaches seems to be a major trigger for the cluster attacks. I am not sure if the brain can sense such changes or if its the actual pressure on the head that causes the attacks but one thing is for sure its the colder weather that causes me the most pain.

 The last few weeks i am finding that every morning i am being woken at 3 or 4 am and sometimes even earlier due to the pain starting at the front of the left side of my face. One problem i have is pain in the neck that also seems to aggravate the condition and can cause it so much pain that it will eventually set off a full attack. i have spoken with the doctor and there isn't really much she can do other than refer me to a specialist for an MRI scan on the neck and the spinal cord as she feels that is where the problem may lie. In the mean time i just have to put up with the pain and the constant attacks and hope they don't take too long arranging an appointment for me.

One of the biggest problems i seem to be having at the moment is with my walking and pain in both my legs 30 seconds after moving. I have been to the hospital and they have scanned them for blood clots but nothing showed up and the doctor checked my circulation and it seemed to be fine. Yet i am still getting pain right up both legs when i move about and can hardly walk. I am also finding i am getting pain down my left arm which at first was a bit worrying but i have had my heart checked and there was no issues but still i get the pain and the feeling like numbness. I am also getting it from the shoulder at an angle across the front of the left of my chest. The doctor has referred me to the vascular specialist as she is unsure why my legs are so problematic and what on earth is going on with all these other symptoms. It could be that there is a nerve trapping in the neck that is causing these problems but until they actually take a look at me its a worrying situation.

I have my appointment at the Gastroenterology department in Llandoch hospital at the end of the month, next week, and hopefully they will be able to take a look at me and tell me what is happening about my hiatus hernia and whether they are going to operate or not. They will also be able to look at the reason why food and drink is trapping when i eat and causing me to choke all the time. It just seems ever since i had the hiatus hernia all hell has broken loose. The amount of problems i am getting is crazy. I actually started writing this blog the other dasy but had to stop suddenly due to pains in the chest again and this time it was accompanied by numbness and pain down the left arm. I originally thought that it was the hernia playing up again and the nerve in my neck causing a problem but to be on the safe side i rang the doctors and was called over there to be seen on an emergency appointment.

The doctor was able to confirm i have a damaged ir trapped nerve in the neck as she pushed on a few spots of the neck and then suddenly i was getting extreme shooting pains down the left arm to the tips of my fingers. The confusing thing was the numbness in the arm and the chest pains so after she examined me she insisted i have an ECG just to make sure everything was ok. I was glad she did insist and so was she as after i had the ECG it showed an abnormality in my left Atrium of the heart and she has now put me on aspirin and referred me to cardiology. I Just cant believe my luck! My health has been gradually getting worst ever since i the hernia came about and i first started the drug trials with different medications in order to get control of the beats and hopefully stop the cluster headaches all together. not only did we fail in controlling the attacks and finding the right combination of medication to get it to go into remission but it has now caused me serious problems with my health. 

 There's not really much i can do about it other than except the situation and get the treatment i desperately need and hope things will improve over time and not get any worst than it already is.  i am determined not to let this effect my fishing and will still get out as much as i can on the local waters. Ok i will now have to take things easy and keep an eye on myself during the trips but i refuse to loose the one thing i love so much and that is keeping me sane. Its hard enough to get out as it is  the last thing i need is more problems stopping going out altogether so hopefully the referral wont take long and i will get some idea on how i can manage the condition and continue my sport. 
  

I would fight it all the way but sometimes i really wonder if i have the strength...

The worst thing about being ill is having to wait for referrals or appointment from your doctor and specialists and especially when they haven't got a clue exactly whats wrong with you. i can understand that the health service is overwhelmed with people taking advantage of our free medical treatment and services and i can understand that the staff are stretched to the max. What i can't understand is when things are starting to become serious why they continue to drag their feet and take ages to get you the help you need. usually that help comes either when its too late to do anything about it or just before things get out of control. 

I was diagnosed with CH Cluster headaches or as the Americans now call it, Hortons Neuralgia in 2012 just after a huge bout of attacks and when my condition changed from an episodic sufferer with a few attacks every couple of months to a chronic sufferer with attacks happening on a daily basis with a record number of attacks in one day hitting a massive 12 attacks. The average number of attacks i would get was between 6 to 8 per day and now i am under medication and treatment this has now dropped to between 2 and 4 per day. Thankfully i no longer get them every day and manage top get at least 2 to 3 days per week with no attacks at all but these are intermittent and i never know when i am going to be completely pain free.

Since things started to get worst with my health i now have pains down the left side of my back and the base of my spine and i also get constant pain in the left side of my neck. Dispite constant treatment under the physio therapists to try and ease this problem it has been gradually getting worst over the last 12 months and i now have to deal with pain EVERY day even though i get days with no CH attacks i still have to deal with the back and neck pains. No matter what medication i take or pain killers this pain never seems to go away and is slowly grinding me down daily. I have been back and fore for appointment after appointment and they still are no closer to a solution or any idea what is going on.

After being experimented on for a couple of years with different medication in order to get the clusters under control and having to deal with side effects and allergic reactions that almost killed me, I now have to suffer from a Hiatus hernia that seems to be causing infection after infection and causing allergies to things i previously never had a problem with. Not only do i have to put up with these constant infections but its is now causing so much pain in the chest on a daily basis that several times over that last year i was rushed into hospital in fear of heart problems and even though i told them it was the hernia they made sure i was put through every test possible to ensure my heart was fine. It has now got to the stage where i can no longer eat with out experiencing food and liquids trapping and almost chocking me and along with this comes sharp stinging pain to the chest on the left side where the hernia is.

I am still waiting to see if they are going to do anything about it and in the mean time my health is just getting worst and worst. I started to have problems walking every now and again over a year ago where once every couple of months i would get this strange feeling in my legs like pressure is building up and the muscles are rock solid and when i try and walk it hurts like crazy. This seemed to come and go and i always put it down to the nerve in my back that is causing all the other pains. Now all of a sudden its become a daily problem and now i can hardly walk normal at all. Its always there and as soon as i start to walk, literally 30 seconds into moving, the pain begins and every movement is agony. I have been to see the doctor on several occasions complaining about this and they have no clue what could be causing it. Again i am having more blood tests and again i have to wait to see if they find anything out or to see what they can do about it, Every day that passes it is becoming harder and harder to walk any type of distance and i am finding myself trapped in my flat once again even though i have been trying to make an effort to get out and do something like fishing but every time i plan a trip something happens or i am too ill to go. Summer has come and gone and i think i have only been out fishing a total of 4 times all year and its really starting to get to me. The depression side of my illness is very hard to control lately and i am really struggling.

It seems no matter how much i complain to the doctors and ask for help nothing seems to get done and all they can do is shrug their shoulders and refer me on to someone else who ends up clueless as to whats going on. The amount of test i have had over the last year is just getting crazy and i have had so many different appointments i could actually set up home in the hospital (wouldn't be a bad idea) yet i am still clueless as to what has caused it and what can be done to make me well'ish again. I have more appointments coming up in the next couple of weeks and some with my specialist at the hospital so i am going to ask and see what can be done about my situation and the difficulty i have walking and moving about. Surely they must have some idea what it could be and i think if i knew what it was i wouldn't worry or stress so much. I just wish i could catch a break and i know i am going to have to really try and make the effort to get out and go fishing over the next couple of months and not let this illness get the better of me. I promised myself i wouldn't give in to it and wouldn't let it stop me trying to live as normal a life as i can and i would fight it all the way but sometimes i really wonder if i have the strength anymore. 

More and more health problems as time goes on. I just wish i could get a break!

As usual as soon as things start to improve and i think i have a strong hold on my health something happens and feel like i am back where i started. I had my appointment for the 2nd Endoscopy to see why food and drink was trapping all the time and causing me pain in the chest and when they looked they found that the Hiatus hernia hasn't got any worst and isn't causing a blockage but when they tried to get the camera down my throat they had problems. The entrance to the esophagus kept staying closed instead of opening up after swallowing , they made me swallow twice with the tube down my throat and still she couldn't get it to go down. Eventually i had to push on my chest with my hand, exactly the same thing when food traps, and the entrance opened and they were able to take a look.

The specialist seems to think i have developed a rare condition and had to take 4 biopsies to do some tests on and see if she is right. She also said the problem with the entrance to my esophagus could be from having spasms and that's the reason why its staying closed. This could be the reason why food keeps trapping and is also a big problem that needs further investigation and if it closes tight whilst i am asleep i wont be able to breath properly and could suffer asphyxiation during me sleep. I really didn't like the sound of that news but she assured me this is VERY rare as the body naturally will awaken me due to trying to protect itself and get oxygen to the brain.  The only time i have to be careful is if i am ever under sedation where i will stay asleep. This is the first time i have ever heard of such a thing but i am sure they know what they are talking about.

I now have to wait 2 weeks for the results and am booked in ready with my doctor to see what can be done about it and how we can continue with the hiatus hernia and all the infections and problems it keeps causing me. I am also being referred to a  specialist who deals with this kind of stuff and also the rare condition they were talking abut so god only knows how long this will now take. I have also been getting problems with my walking all of a sudden. I started getting them at the beginning of last year when i was having major pain in my back. As i walk i suddenly find that pressure is building or my muscles are completely tensed up and it begins to hurt with each step i take. As i walk further or try to ignore it the pain just increases to a level where i can no longer walk let alone stand and have to sit down where ever i am and take the weight off my legs. After a couple of minuets it starts to ease and then i can continue my journey. I am finding i cant walk for more than 2 to 3 minuets before having to stop and instead of it happening once ever week or two it has now become a daily issue as from last week.

My doctor was very concerned when i reported this and sent my straight up the hospital to have a scan for any blood clots on the legs. They didn't find any major clots ion the main veins but did find a small lump in what the call a secondary vein and i was on blood thinning tablets and medication to break it down. Within a week it was gone so god knows what it was but the doctor ensures me it wasn't a clot. She seems to think its a fatty build up such as a cholesterol pocket and with the help of the medication this has now been broken down. It all sounds a bit strange to me as i thought clots were fatty build ups but apparently a blood clot is actually blood. All i know is i don't have any clots and the circulation in my legs is fine so what is causing all this pain and weakness as i walk is a mystery until we get the results of blood tests back. I have lost count of how many different blood tests i have had over the last few years but one thing i do know my veins in my arms are now buggered and there is so much scar tissue they have become unaccessible. 

When they were trying to sedate me for the endoscopy they turned round and told me i have rhino skin on my hands as the skin has become so hard they almost couldn't get a needle in. They really had to push hard which resulted in a lot of pain as the needle went in but eventually after 4 attempts they found the vein. Its crazy how much treatment i have been having over the last 6 years and my personal medical file is massive. I have also been keeping copies of all my diagnosis's and my appointment letters and i have now filled a file cabinet at the side of my desk. Its just getting crazy. I am actually starting to think they are using me as a Ginny Pig and seeing what medications they can give me and what side effects it may have. I know that's not true , its just how i feel lately.  Why can't things just be simple and say "this is what you have...! and "This is the treatment you need!" , instead with me its test after test and then more tests. It was bad enough being diagnosed with cluster attacks and finding out there isn't a cure but now i am finding more and more health problems as time goes on. I just wish i could get a break!

Attacks are increasing and health going down hill, but its chin up and get on with it.....

The last couple of months has seen a huge decrease in the number of attacks i have been getting on a daily basis. it started when i was put onto Amitriptyline on a regular dose of 10 mg. I ended up having to stop this medication as the Hiatus Hernia i have has become so problematic i can no longer eat and drink with out pain and chocking and having to massage my chest to make things pass through. I ended up having to take Domperidone which is used to help food and liquids pass through the upper stomach a lot quicker than usual. This seemed to help and things became easier but the attacks didn't come back to the level they were before and i was grateful that they continued to decrease in number.

I have had to wait a while for an appointment to see how bad the hernia has become and during this time i have hod loads of strange things happen and problems arise. I have been getting reoccurring infections of the chest and throat and constant fungal infections within the mouth including oral thrush. I have been getting rashes that appear from no where and the latest thing is to do with my walking. I don't know if its from the attacks i get or a side effect of something else caused by the hernia but every time i try and walk to the shops i can't seem to walk very far with out being in extreme agony. The muscles in my legs feel as though they are both constantly tense and the legs hurt up the front and the back of both. The pain turns to a burning pain when i try and walk that little bit more after they start to hurt and what is causing it i really don't know.

I reported it to the doctor a couple of weeks ago and she rushed me up the hospital to have both of my legs scanned in case of a blood clot that could be causing it but nothing showed up.  It doesn't matter if i have been rested for a while or i am doing something strenuous it seems to come straight away after 30 seconds of walking and takes a good 10 minuets to ease off after i sit down and take the weight off my legs. If this wasn't bad enough my attacks have decided to return and once again i am getting woken by the beast in the early hours. I am booked to go into hospital once again on Thursday for an endoscopy to see how bad the hernia has become and they will then tell me exactly what they are going to do about it and whether i need an operation to correct it. 

I also have an appointment the day before with the physiotherapist who has been trying to help me by using small and simple exercises to ease the pain in my neck and back but unfortunately they haven't helped at all and in fact has started to make things a lot worst as i am now in constant pain with my back all down the left side and every time i do these little exercises i end up in more pain. They also seem to be aggravating my cluster attacks so when i see her next i am going to have to insist we stop them for a while until i can get some sort of control over the things that are going on. Its bad enough having to deal with one problem at a time but with me it seems i always have two or three different things going on all the time and this is really making my life difficult.

My luck as far as my health is concerned has been really poor and i seem to be getting worst not better.l Every time i think i have one thing under control something else comes along to mess things up again and no matter how hard i try and manage these things i just cant seem to get a grip of things. My depression has been all over the place lately and sometimes i wonder how on earth i have managed to continue up to this point. It doesn't help the amount of medication i have been having to take all the time. Not only has it messed the body up and the bowels but also my stomach and i am now paying the price for taking so many tablets. My stomach feels like a washing machine constantly tumbling and bubbling with wind. I am constantly bloated which also effects the hernia and causes me a lot of pain just above my stomach and under the chest not to mention the amount of cramps i get from the bowels.

I just wish i could have a full MOT and once sorted i wouldn't have to take another tablet and could just get on with my life. Ever since all this started i feel as though my life has been taken away from me and i now live in a permanent cocoon keeping me from the outside world and enjoying what life has to offer. I am watching things just pass me by, watching other peoples families grow and children grow up and i feel like i am missing out on so much yet there is nothing i can do to change this.  I try to hold on to the small things i still have such as my computer and the web sites i now run and also my fishing when i am well enough to do it. These are the only things that are keeping ,me sane at the moment and with my fishing eb site growing rapidly and becoming more and more popular each day it gives me something to fill my time and keep me busy.

Maybe one day the attacks will ease completely and the cluster headaches will go into remission or become episodic once again and i would only have to deal with them once or twice a year for a short period but that seems to be wishful thinking. With the attacks once again on the increase and my health rapidly becoming worst i just don't know what to do in order to improve my situation and can only hope and pray that the treatment i get over the next couple of months will help a little and ease a few things off for a while. Lets hope i can get out and do a bit more fishing over the next few months as i have missed out on so many trips this year due to illness and pain so i need to make up for lost time and force myself to get out and stop shutting myself away in the flat in fear of attacks all the time. I am planning on a fishing trip in the next few days and weeks so fingers crossed all goes to plan and nothing comes along to mess it up.

It Don't Rain, It Pours..... Time for an Operation!

Well every time i think my health is improving something happens and i am back to square one. Just as the attacks started to ease off and become manageable again the hiatus hernia has decided to become so problematic that not only am i getting pain daily and problems with eating and drinking but it is also causing infections that keep returning once treatment has finished. Talk about having bad luck when it comes to my health. Each time i eat something or drink it seems to trap at the top of my chest and doesn't pass through properly. This then causes me stinging pain and i have to massage my chest and push inwards with my hands until i feel the hernia move and pop and the food or fluid finally passes through bubbling as it goes, which feels really strange. This is the only way i can eat or drink.

Again my eyes have started to become sore all the time and i am getting strange rashes appear over the body and the skin sometimes becomes red and sore down my arms. This is accompanied my a feeling of weakness and tiredness all the time and a bad case of oral thrush that i have been constantly treating now for well over 6 months. I visited the doctors once again and they have now done an emergency referral to get the hernia operated on and sorted out once and for all as its affecting me so badly. Again it has caused an infection in the chest area but i cant have antibiotics as i have only just finished 2 different types and by giving me more will cause an immunity to them so my body has the fight it naturally until i have the operation. The thrush is so bad it has effected my taste and everything tastes disgusting and my mouth constantly feels sore.

Suddenly i am having problems walking and can no longer walk to my local shop with out my legs turning to jelly and becoming so painful i can't stand. The doctor rushed me into the hospital in case it was a clot that had appeared in the lower legs but everything was clear so it looks like its the nerve that is causing me pain in the back. It seems like its effecting my walking a lot worst than usual. I have been getting a few bad cluster attacks over the last week as we have been having some strange very hot weather. Although the temperature is up and some days it is very sunny it still seems very close and there is an electrical feeling in the air as though a storm is on its way and its this that seems to effect my head and nerve and bring on attacks when i least expect them.

I am hoping the hospital wont take too long to arrange the appointment for the pre op and then the actual operation itself. Don't get me wrong no one wants an operation and least of all me but i know its going to improve things at the moment. I am so grateful technology and medical treatment has improved in leaps and bounds over the years as the doctor informed me 10 years ago they would have had to split my chest open to operate and the hiatus hernia resulting in recovery and hospitalization that could last for months or years. now days they do it through keyhole surgery and i could be in in the morning and back home the same evening. The one thing i am not looking forwards to is having the camera down the throat again so they can see the position of the hernia and just how bad it has become. the last time i had it was bad enough and couldn't stop gagging so i am praying it will be done quickly and things will be solved sooner rather than later.

The early morning wake up attacks are doing my head in!

Even though i have been getting less attacks than i usually get so far this year i am still struggling to cope with the early morning wake up calls from the beast. Every morning for the last 2 months i have been woken up at 2 am or 3 am with some massive attacks starting as soon as i open my eyes. I think having to sleep at an angle because of the hiatus hernia is aggravating the cluster attacks and making the morning one more regular due to lack of sleep and discomfort. I have tried laying flat for a couple of days to see if it helped but nothing changed and all that happened was i was wheezing as i breath due to the hernia blocking my airway and this kept waking me up every hour through the night. Thankfully i am due to see the doctor on Tuesday as i really need them to chase up the treatment for the hernia as now food and drink is trapping all the time and every day i am in agony with soreness and stinging pain in the chest. Every time i eat and drink and swallow it just traps there and i have to push on my chest hard for it top pass through and sometimes i have to massage it for a while as it can be stubborn and not let anything pass.

 It has started to get worst over a period of time and if its ;left i think i will have problems eating and drinking permanently and it will eventually end up with me being unable to eat or drink anything and then i could be in real trouble. I had to cancel my last appointment with the Physiotherapist as i was in agony after doing the exercises that she gave me to help my neck and back as it just seemed to make my attacks worst. I started to get severe attacks during the day and they kept on returning so i ended up cutting the amount of exercises by half to see if it would help but still i was getting problems. I am due to see them again on Wednesday so they are gong to have to see if there is something else they can recommend as these exercises seem to cause me too much pain. Its bad enough i have to deal with pain every day anyway so i really don't need it being made any worst than it already is. Lets hope there is something else i can do to help me manage all the pain. 

The rest of my treatment is on hold at the moment as there is nothing more they can do until this stupid hernia gets sorted out. A Hiatus Hernia is probably the worst kind and since i have had it all sorts of strange things have been going on. i have become allergic to things i have never been allergic to before. I have been getting severe chest pains and been rushed into hospital more than 5 times with them thinking i am having a heart attack and it turned out to be the hernia playing up and causing me pain. I have been getting strange rashes and sore eyes for no reason as though i have suddenly developed hay fever and my skin suddenly becomes bright red and sore for a short period for no reason at all. All this started when the hernia started and since then i have been living a nightmare. I am praying they will do something about it the next time they shove the camera down my throat to see if it has become worst or to see what else is going on.

 The constant infections and oral thrush and fungal infections in the chest is really getting to me so i pray to god it will all soon get sorted. The trouble is over the last few years the hospitals have become so busy and understaffed its crazy waiting months and even years for any appointments or treatment so god only knows how long i will end up having to suffer. It took long enough to get my appointment with physiotherapy, it was just over a year and 3 months before i received the letter inviting me to call and book my assessment appointment and it was classed as urgent as i was referred whilst i was in hospital being treated for constant cluster attacks and severe neck pain. The last time i saw my neurologist they then sent me a letter instructing the doctor to expedite my appointment for the hernia so i will take that with me when i go to see the doctor on Tuesday and hopefully they can then get something arranged. Until then i just have to wait and suffer in silence. 

Waiting over a year for an appointment with the physiotherapist

After waiting over a year for an appointment with the physiotherapist i finally managed to get seen only to find out there isn't really much they are able to do for me. The damaged nerve in the neck and the back is just way to damaged to do anything with. I can't have an operation to repair it and i cant get treatment to make it better so i just have to put up with the pain and trouble i am getting on a regular basis. They can help me manage it a bit better than i have been by using very small and easy exercises that will help ease the tension in the muscles around the damaged nerve. They have given me 4 small exercises that should do the trick and i have to do them every day.

I started the program with no trouble gradually building up over the first couple of days but than after a week of doing it i ran into trouble. All of a sudden my attacks started to become regular again and i had to put up with 4 huge attacks one after another. This is because i aggravated the nerve in the neck and the muscles either side causing it to set off my cluster attacks. I really tried to get to grips with the program but it just seems to cause me more pain and trouble than its worth. I am scheduled to see them again in a weeks time so i am hoping there is some other way we can help my condition and help me to manage all the pain and problems, that are slowly getting worst, with my neck and my back.

Every day i experience sharp shooting pains up the left side of my back just left of the spine. This pain shoots into the base of my neck on the left side effecting my shoulder. I have also been waking up with a complete dean left arm. Its not from cutting off the circulation in your sleep like i have actually done a few times and within seconds get the feeling of blood rush back into the arm and tingling from the hands up the arm. This is different, it actually stays dead for several minuets and when it does come back to life i don't get any tingling sensation i just have a dead arm feeling in the upper muscle of the left arm as though someone has punched me in the arm really hard. Why my arm keeps going dead is anyone's guess but i am assuming it has something to do with the nerves on the left side of my body and the problems i have been having with my neck and my back.

My neck is as painful as it has ever been and keeps flaring up and causing me a lot of discomfort. When its at its worst i can hard;ly turn my neck left or right with out getting very bad pains. Even when the pain is minimal i still cant look over either shoulder and place my chin into my chest as it just causes too much pain and agony. I can look up with out any problems or pain which i find strange but i can feel a line down the back of my head into my neck and then down the left side of the body that i can only assume is the nerve that is causing all the problems. The other morning i woke up in the early hours with yet another visit from the beast. The attack started around 3 am and i can only assume it was the cold and drop in temperature that set it off. The strange thing about this attack is the entire left side of the back of my head went ice cold. A really strange sensation that i have only had a couple of times and is very scary when it happens.

Although i am still having major health issues and my hiatus hernia is causing so many problems i can hardly eat or drink properly i am still having the lowest amount of attacks i have ever had. he total amount of attacks i get on a daily basis has halved and i now find myself with more attacks free days the ever before but they still aren't  pain free days as i have to contend with the back and the neck playing up and also the hernia causing problems. My luck regarding my health has been really bad the last 10+ years and i am hoping and praying to god for it to change soon. I have managed to get out fishing a couple of times over the last few months but have had to deal with attacks whilst on the bank. I am hoping to get a=out a bit more in the future as i feel i need to start getting out of the flat and in the fresh air a bit more before it starts to drive me completely insane. The doctors have started me on a testosterone replacement program as my levels suddenly dropped to a very low level at the start of the year and i have also reduced the amount of simvastatin i take for cholesterol which is a good sign as it means i am starting to get it under control.

I have only been on the testosterone replacement for a couple of days and already i am feeling a bit more positive in myself and am grateful that the medication and treatment has all started and slowly but surely i am learning to live with this condition. If someone was to tell me 10 years ago that i would be living with a rare condition that there is no cure for and very little treatment and that i would have to be in severe pain every day for the rest of my life i don't think i would have been able to continue and wouldn't have believed them. Now that i am under treatment and am learning how to deal with the constant attacks and pain its starting to become second nature. I really don't think i will ever get used to the level of pain the cluster attacks cause and i will always be scared of being out in the cold in case it sets off attacks but at least i am starting to learn how to live as normal a life as i can considering the amout of health issues i have. I just really hope it gets better and not worst again!