Neurofibromatosis or NF1
I want to talk about NF1 and how it had impacted on my life, I have added a few other pages to better explain what it is and what pain management is.
- Pain Management
- Spinal Cord Tumours
- What is Neurofibromatosis?
I was diagnosed with this early last year, it was all brought on by a work injury, due to being overworked and not having proper break times I slipped a disc and it pinched my sciatic nerve. This injury was quite severe and it then aggravated the nerves in my spine. It was very annoying as I had told my employer countless times that it was exceptionally unsafe for him to force me to do such long hours with extreme workloads and no breaks. In fact we would literally have to beg for a break and each and every week without fail he would doctor my clock card and alter the time I logged in and out. It was a shock to work a 60 hour plus week without any breaks and then see a pay slip stating I did a 38 hour week WITH a 1/2 hour break EVERY day!! Are you kidding me!!! I would ask many a time for my proper pay and to be looked after and I would be threatened with my job. Now I hear you say I could have just left. Well you see I was working in a massive venue where there was a lot of room to learn other things. There was a lot of opportunity to do things that I would never normally get to do if I was working in a small venue. So for my career I stayed, unfortunately it was a career ender because of the shocking standards I was pressured into. The plain and simple fact a fact that would leave a bad taste in any persons mouth is if I had been properly looked after I would not be sitting here typing this today!
It was over 4 long years of chasing our tails trying to try to find out why I had not recovered because the initial injury never healed. We found out that I had a very rare form of Neurofibromatosis with 12 fibromas growing from my neck to my lower back. All the years it took to be diagnosed were nothing short of hell. The day that we found out the diagnosis was a bit of a relief, we finally had a name to what I had been suffering from for so long. I do have the rarest form as it’s in the spine, the specialist that diagnosed me was pretty excited to see something new. I was fortunate to be able to get full genetic testing of my blood sent overseas to and all the results for free as it was all for medical research. Yay to being the lab-rat!! The flip side of being a lab-rat will help diagnose other people who would otherwise have gone undiagnosed.
Since being diagnosed it has been a roller coaster of getting my pain managed right. I think that I can almost tick the entire list of medication used in pain management and sadly I can also tick the list of side effects too. 😦
In April 2010 I went through what we can only describe as hell week. I was admitted to hospital for a Ketamine infusion, were I was hooked up to a drip of Ketamine for a week. This was to alter the pain receptors in my body and is intended to help my body be more receptive to pain medication, thus hopefully needing less. While on Ketamine they reduce your normal pain medication by more than half your usual dose and they monitor you. Most people can have this treatment and often the weeks after the treatment they are almost if not they are pain-free. I was unfortunately not one of those people as this radical treatment didn’t work at all, it was hell week for little to no gain sadly. I was prescribed less half my usual medication a quantity that before I was in hospital was insufficient as I was suffering a lot of breakthrough pain. So lots and lots of pain, not able to move much, on a shocker of a bed that made my pain worse…Needless to say the only good part of the week was being able to safely and quickly change medications.
It’s also difficult being pain managed as there has been an extent of negativity and there have many things that some individuals that have done that made my life very difficult living with NF1 hard, well more harder than what is should be. People cannot see pain so what they can’t see they tend to judge. It has been terrible to have to literally throw hundreds of pages of doctor’s reports to those whom it is none of their business, but they felt the need to tell others I was “faking it” All those reports say the same thing, “Multiple Fibromas” “Severe Pain” “Bulging Disc”….. Even with all that evidence presented they have said this vile rubbish behind my back. The very same person had also said I was a “drug addict”, you cannot begin to imagine our shock when we found this out. As per usual as it’s been in the past creating stories out of thin air. There is a wonderful quote that I wish she would take to heart and that is “If you did not hear it with your own ears or see it with your own eyes, don’t invent it with your small mind and share it with your big mouth”. It gets very tiring to hear the old line “but that is the way I interpreted it” you see when it is a complete and utter lie well that is not an interpretation, it is purely a malicious and vicious lie, nothing more, nothing less. When a person says they are prescribed medication, it is what they are prescribed, how can you say that the same person whom you have known the ENTIRE medical history and how they have fought AGAINST having to take medication is a “drug addict” it makes not sense whatsoever other than being vicious. If anything I urge this person to look closer to home at what a “drug addict” is and stop going about putting what you should be saying about them onto me!
This is the very type of crap that makes it incredibly hard, it is a constant fight for me and to be put in such baskets, particularly by people who know my history. I would rather enjoy life and live it to the fullest versus have to defend myself from such attacks. Bill and I have decided that it is easier to not share information with her as every single time she twists it to what it is not and then plays cute to try and get out of it. Like I said I have better things to do with my time, no one deserves this sort of rubbish.
Another thing that has made things difficult is the same individual (also why we ill not share anything) is copying what I have and copying my symptoms, from the way I walk, the pain I have, the medication I need, thinning hair, inability to eat on warm days and so on, it’s a long list and it really is draining. If anything its worse for the medical system having this person hop from Dr to Dr to Dr trying to get a diagnosis for something that does not exist. I try to live life as best as I can and I certainly do not need someone copying my every move and try and pull my positive outlook down. I want to do everything I can to be able to live life as best as I can. I certainly do not doe everything I cant to ignore Dr advice and eat, drink and do everything they say NOT to do.
This page is to be informative to those family and friends whom were so viciously incorrectly informed, this is so that they can understand the real truth of what is wrong. It’s sad that we were forced to talk more about this to set things right as this should have never ever have happened. We guess some people have nothing better to do with their time. The good news is that by talking people will better understand what I am going through and what sufferers of NF1 go through. I also get a lot of the hurt and anger out though most of the hurt and anger would have been avoided if the truth had been said and not elaborate made up stories!!This page will also be dedicated to my thoughts and ramblings about this condition.
Where the hell are all these bruises coming from? I look like I have been pummelled against a wall although the bruises are in the inner part of my legs. These bruises are the hideous black kind that hurt lots, a few of the worst ones are on my inner leg, a place that is not normally prone to bruising. The doc is now very worried about it, I now have to have tests on my bone marrow. Dammit, what next!!! Humph!
- More damned bruises, is this going to stop!!
Bruises an update!!
Well I am happy to give an update on my bruises, although they are still there and show not many signs of easing up all the tests result came back with the all clear. Seems I am now just that bit more sensitive to things than what I was before!! Its was such a worry as I used to literally have to be hit by a truck to get the slightest of bruises. The issues that made it that bit more of a concern was because of the night sweats and bleeding of the gums. The doctor thought that there was something wrong with my bone marrow, EEK! Lucky it is all clear and I am fine.
I am so tired
Bloody medication, I am so tired all the damned time, I have never felt this tired ever in my life. I have been on the new medication for almost 2 months now and STILL the tiredness just cannot be shaken. I have never wanted and needed so much sleep ever. Boo! I think sometimes that I can tick the entire list of side effects, it’s been a rough road that does not seem to be flattening out. Tiredness, my gosh it’s a killer, coffee is my friend to a degree, I don’t want to add another problem by too much caffeine!! I must say though as it is winter right now it is nice to be snuggled up against the flannelette sheets and fluffy doona. Merlot seems to think that this is pretty good too!
A year on
Its now been over a year on the new medication, I am still tired all the time and still need to sleep lots, I hate missing out on the day. I am lucky that my friends are so understanding. Nic a very dear friend came up to visit and left whilst I still slept, ordinarily this would be rude but she understands. To quote her “love ya guts”
This body does not like it when it’s warm…
I reckon if I was a bear hibernating for the winter I would be pretty darn happy right now. I do love winter as I am not affected so much by heat. The only time in winter that I am affected by too much heat is when we go to homes where the heating is up too high. The outlaws are a great example of this, Henk loves hot weather and will have the heater on its highest possible setting regardless that everyone around him is melting. Pien is well-known for turning the heat down on him and opening doors when his is not looking!! LOL. It is quite funny to watch her going back and forth and waving doors to get some air into the lounge!!
Only once have we been in their house was not like an oven and that was when they had a visitor as always in company…..Needless to say I was pretty darned happy that day I was able to eat and relax without feeling sick and overly hot. It is generally its very hot and stuffy all year round, Bill will be the one sneak to the heater and turn it down!
I personally find that it’s a massive waste of energy to be sitting about in tee-shirts while a heater is blazing hot. It’s far more cheaper to put a jumper on. I know we can’t afford to have luxuries like that and I know that for the simple sake of the environment it is better to put a warm top on versus turn the heater up! Oops I got side tracked!! LOL
Heat is a very big problem for me and for so many reasons.
It’s so annoying to spend all the time it takes to prepare a wonderful meal, put the food in front of me and due to getting to warm I can’t eat. So many meals have been back in the fridge used for leftovers the next day, it’s just not funny. It’s a difficult thing to explain but I just am not able to eat properly if I am too hot. I just plain feel unwell. It can be very hard going out to dinner and getting too hot. I sit there with beads of perspiration pouring down me while others are comfortable. It’s pretty rough!
It was a joy to be in Europe late 2009 other than going into shops where the heating if often up so high!!! We were pretty lucky with the motor home that we had hired as it kept at a nice warm when needed and was nice and cool to sleep in at night.
Now that we are in August the weather is turning and already I am having problems with heat. It is SO annoying to wake multiple times a night sweating like crazy. I thought that by now some of the side effects may be more settled. Well this is one that has not settled at all.
My Ketamine Infusion
I guess I have not really said much about this thus far… I am going to talk about this as I understand it so please don’t take my word as gospel only take it as another persons point of view or so to speak my story! As with anything like this people need to be heavily monitored by proper pain management professionals and doctors, its is certainly NOT something that you should go alone.
It’s in my opinion a radical treatment but with great intentions! I knew that this was going to be very difficult so I was not sure if I wanted any visitors. In particular I did not want my parents in law to be there. They would have made things that bit more difficult and in all honesty it was my time, they often fail to understand that there is other people other than them. They can be exceptionally hard work and when you are in a hospital bed trying to fight through a very difficult time you need all your energy focused on the issue at hand and not about the latest illness that they have gotten due to a life of salty fatty sugary over indulgence and a sedentary lifestyle! I guess at 7o I will know!! *eye roll* LOL. I also wanted to avoid the potential of Mother in Laws story telling, well elaborately worded lies to be honest and when I am trying to focus on my needs I don’t want to be focussing on damage control due to her over active imagination!
I was admitted to the Victorian Rehabilitation centre under pain management specialist Clayton Thomas. Dr Thomas is an amazing Dr in the field of pain management, he has been very helpful for us over the years even if last year I wanted to swat him on the upside! My feelings thus far of pain management are not 100% positive due to a couple of pain specialists I have encountered and it feels like the doctor automatically thinks you are taking way to much medication so the first step is to get off the medication. This may be true for a lot of people, pain is different for each person and we all react differently. When we have an injury or illness that is causing pain we take pain relief. Over time the body gets used to that medication and we will end up needing to take more to alleviate the pain. There is also the issue that people can and do get addicted to pain medication. How many times have you heard in the media about the latest Hollywood star that has died or become seriously ill or in rehab due to pain medication abuse. It does and will happen, this is fundamentally why pain needs to be properly managed! Another thing that happens is that the pain receptors become less and less effective individuals u will feel more pain. They can even feel excruciating pain at the most simplest of things!! It’s a bit of a cycle, there is even a phenomena where the body will feel pain in places totally unrelated to the injury/illness! These reasons and more are why I am so diligent towards my own health needs, I want to make sure I am doing the best I can as best as possible. So what happens people take more and more medication or feel they need to take more and more? The body becomes used to the medication and then pain receptors go haywire it now becomes a very difficult thing to treat. One thing to fix this is a person can go cold turkey, this depending on the medication that the person is on could prove to be very dangerous. There is an alternative and that’s is a Ketamine infusion, which is what I am going talk about.
What is Ketamine? (from my favourite place, Wikipedia)
Ketamine is a drug used in human and veterinary medicine developed by Parke-Davis (today a part of Pfizer) in 1962. Its hydrochloride salt is sold as Ketanest, Ketaset, and Ketalar. Pharmacologically, ketamine is classified as an NMDA receptor antagonist.At high, fully anesthetic level doses, ketamine has also been found to bind to opioid μ receptors and sigma receptors.Like other drugs of this class such as tiletamine and phencyclidine (PCP), it induces a state referred to as “dissociative anesthesia”and is used as a recreational drug.
Ketamine has a wide range of effects in humans, including analgesia, anesthesia, hallucinations, elevated blood pressure, and bronchodilation.Ketamine is primarily used for the induction and maintenance of general anesthesia, usually in combination with some sedative drug. Other uses include sedation in intensive care, analgesia (particularly in emergency medicine), and treatment of bronchospasm. It is also a popular anesthetic in veterinary medicine.
What happens when you are admitted to the hospital is they put in a PICC line, this is kinda like a drip but the medication gets a bit closer to where it needs to be, below is an expert from Wikipedia about a PICC line, you will also be able to see some very informative videos on YouTube. I was actually put a lot more at ease after seeing the YouTube footage. If you’re not squeamish about these sorts of things and you have to get a PICC line at any time I would recommend having a look at some videos, it helped me!!
A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition). First described in 1975, it is an alternative to subclavian lines, internal jugular lines or femoral lines which have higher rates of infection. Subclavian and internal jugular line placements may result in pneumothorax (air in the pleural space of lung).
Full picture of PICC line
Close up of Picc LineAfter having the PICC line inserted at a different hospital we then made our way to Vic Rehab, we went though all the relevant paperwork and my admission procedure was complete. They quickly hooked me up to the drip and the whole procedure was underway. The whole procedure takes a week and they gradually up the dosage of the infusion till they have gotten to the required effective dosage. I think its 30 mg (?) per hour, to be honest I don’t quite remember but I recall seeing the number 30. They then literally halve your medication, the aim is to keep dropping your usual pain medication as the Ketamine levels go up and up. This is to help drop your needs and reset the pain receptors.
The week was in a word hell, the first few days I battled the worst dizzy spells, nausea and vomiting that I have ever had in my life. They even had to stop the infusion at one point, I was utterly devastated, I knew that this treatment would help and I wanted to give it my 110% effort. The Ketamine also made me more emotional and that week there was also a lot of tears. It was pretty rough to say the least, it killed me when a so-called friend just ignored me too. I guess that while I was going through one of the worst weeks in my life I also realised they were far from what anyone would call a friend, cruelty in its prime!!!! The same person found great joy in gossiping about it too, a sickening way to find out their true spots to say the very least! I don’t understand why they did this, but I guess some people have too much time on their hands, time that would be better spent on other things than this.
What also happened was my pain got worse and worse and worse, at one point I was saying to Bill that if I was not in hospital I would want to go right there and then!! It was hell, I was sobbing my little heart out and they would give me nothing for the pain. At one point I had to wait 12 hours for them to give me medication, medication that we had given to them when I was admitted, medication that we had also sitting in the car!! Due to proper protocol we had to wait, also bear in mind my determination in wanting to make this work. The Ketamine made me so very drowsy, it was such a horrid feeling, it made me very dizzy too, I collapsed on a few occasions, I was chained to my room at all times! I was not able to shower myself, I am a private person and I know that nurses have seen all sorts of jiggly bits before, I just did not want them to see mine. Bill helped me shower every day, I felt like everything was in slow motion. It really was so hard, it was also not made better by the shocking food either, I barely ate, I did not feel like eating either but in the same token I wanted what I ate to at least be edible. The food there was shocking to say the very least!!
It had now come to the final days, I was in excruciating pain, the bed made my pain worse, the inability to walk about also made things a lot worse, it just was a hell ride. The doctor then came in to talk to us about how it all went. He told us it had not worked, he explained that this does happen and its very unfortunate, the word “gutted” does not go even near how we felt, totally utterly devastated is closer to the mark really.
Bear in mind not all people have this experience, for me it basically confirmed I was on the right amount of medication, the type was changed in that week so we did get a positive. The quantity was to be altered till the right amount was achieved, it ended up being identical amount as what I was on before the infusion only a differing amount. It was a hard time, made harder by a couple of things, it’s a time I would wish on no one. It still something that I would recommend to others though, there was another patient that was recovering from something and in a couple of days they were completely off all pain medication, they were able to do rehab and skip out of the place. Don’t take my story as what everyone goes through, everyone is different and we all react differently.
Lucky for me Merlot was allowed to come to the hospital, he actually fretted for me. He is a very well-behaved hound and he even sat with a couple of other patients and kept them company. The nurses asked if we could bring him in more often, there is a lot to be said for pets and how beneficial they are to healing.
Merlot and Dee
We have been asked if we are going to have children, the answer is sadly no. The reasons are pretty extensive, one is the medication that I am on another is the genetic issues and another is that it is well-known that pregnancy will affect the growth of the fibromas. This means that they will grow more faster and larger, as I am already on extreme amounts of pain medication I would hate to think what I would need should the fibromas get any bigger. I have enough difficulty as it is than to add to it. Sadly it would mean that going off medication, I would be in excruciating pain for the term of the pregnancy, there is a 50% chance that this will be passed onto a child and then I could come out the other end with more growths and unable to look after the baby. It’s not something that is fair on anyone really. It’s not been an easy road to get to this, I can imagine any woman faced with the same would feel as devastated as I have. It’s not easy and it will never be easy. I have gotten mighty hurt by a few people these people have actually made the road harder by their callousness. I am a strong person but as I began this entry there are some things that have made things harder than what they should be. I honestly think that people would think a bit beofre they act, or at least put themself in my shoes for a minute.
Telling people we cannot have kids seems to bring on some of the most oddest things, such as “you have not tried hard enough”, wow, like these people know what we are going through and how my day to day life is. You see we have tried every possible thing, we have done all we can and there really is nothing more that can be done. The doctors have said it, the specialists have said it, the geneticists have said it….Really at the end of the day if there was even the slightest possibility do you not think we would have tried it??
Its been also frustrating when people that have children say “I know how you feel”, well no you do not, you MAY be able to empathise but no you have no bloody idea how I feel unless you have been told in your lie you cannot have kids AT ALL. So please, anyone in the future who thinks of saying this, think twice because it’s really damned frustrating.
Another person thought that it was apt to say i was “jealous”, yet again another frustratingly annoying thing from people who have not one clue about what they are saying. Do you know me? No you don’t, Do you know what I am thinking”? No you don’t. So why is it when I say I am blisffuly happy for you and am incredibly excited to the very core for you that you say I am “Jealous” seriously grow up!
Though the most worst came from mother in law *sigh* We had only just found out a couple of days earlier that we could not have children. The day was was a day that really confirmed the reality of it all. We had guessed for a while but until those words are spoke you have some sort of hope, needless to say we were both pretty sombre about it. We had to visit mother in law as FIL was in hospital, so we told her all about what the specialists and doctors had said in regards to babies. She started talking about being really unwell after she had her kids and there was issues in the women’s parts and now she needed a hysterectomy. She told us how she felt “robbed” when she woke up and she spoke about how upset it made her as it was a reality that she could no longer have children. We need to add that we are are also well versed in the line “robbed” as it has been used quite a lot for a number of different things that hearing that line has worn out. Now despite her age at the time it was inadvisable if not impossible to have had children however we are understanding that closure is very much there and understood that it would have been difficult, it would be for any woman.
What followed was not only shocking but utterly disgusting for ANY person to say to another let alone woman to woman. She turned to Bill and I and said “I am so glad that you are not able to have children, that way I don’t have to deal with them”! Now for a second I thought that I heard wrong as that was a pretty damned heartless and nasty thing to say. I turned to Bill and asked what was just said because the utter gravity of what was said was astounding to say the very least. Bill confirmed to me that it was indeed what she had said. Now you would think that after that act of cruelty she would have left it at that, well this was not to be so, in fact she made sure she built on it. Over the following weeks with the same level of utterly NO thought or care she shoved baby books in front of my face time and time again. We told her we had no need for them and she said “give them to your friends”! She then began to knit baby clothes, not just a few things but a LOT of things and again this was under the guise of “your friends will want them” despite that I told her MANY time not to worry, no one I knew was pregnant. For a woman to tell another woman she is “glad” she cannot have children and follow that up with months of making baby clothes, handing over baby books and so on really is the most extreme in cold hearted callousness. Now before we had told her we could not have children there was no baby books, nor was there baby clothes, before then I had friends that were pregnant and no clothes or books, so why after? Like I said cold hearted cruelty, and they wonder why they are kept at arms length!! I honestly do not know what goes through a persons head to do this, the mind really boggles and it makes no sense. Why even say such things, why do these things, what are you trying to achieve??
I am so sick and tired of the crap from both MIL and FIL, well more to the point, WE are tired of it, we just do not need this type of negativity and the judgement that we get. I want to live my life as full as I can, I had a difficult life as a child and I left that life, I certainly do not need to be thrust into the same sort of hurt as an adult. Life is to be there for living and not constantly copping hits from individuals who create stories based on utterly nothing whatsoever and then scream at me it is my fault THEY assumed it or THEY interpreted it the way they did. It is tiring, it is annoying and I understand now why incidents of the past happened the way they did. It was a direct result of lies, stories, extreme judgement, lack of respect and total utter bullshit. Stress is the very last thing we need, we have a hard enough time dealing with what we have than to be constantly putting out spot fires.
The Medical Merry-go-round!!
While we already know what is wrong it does not hurt to try to find out alternatives and find out other opinions. You see one person is incapable of knowing everything so more people would have more ideas. This would give a greater scope for my needs and how best to make day-to-day living better.
After waiting 3 months for an appointment we got to see another Neurosurgeon. It was by a very lucky chain of events that we had found out about this fellow and we had heard nothing but wonderful reviews. Needless to say we were very excited to see him!
When we got there we found that the referral had not gotten to him so he did not have any sort of background knowledge. This can be seen both and advantage and disadvantage. I saw it as an advantage as he had a clean slate and no other persons opinion to work on so basically everything is his own. We talked to him about the pain that I am in and oddly he asked a number of times where was I feeling the pain the most. I repeated each and every time the same answer, in my hip and mid back and pins and needles down my leg that hurt like hell plus lots of aching in my leg. He was confused about that and then he put the envelope that the scans were in and Bill noticed instantly that they were not my scans!!! Hahahaha!! They were an older males scans with a similar surname!! WHOOPS!!
He then looks at my scans and then examines me, does the old tap the knee and check the reflexes thing. The right leg goes up, the left leg does not move at all! That shocked both Bill and I as it was the first time that we had seen that. Anyhow he confirms all the Fibromas and says that there is nothing that he can do, the old inoperable and degenerative spiel. Oh wells at least we tried, at least we are very much confirmed in what I have and how best to tackle it. We ask the Dr what can we do and he says to keep doing what I am doing, physio hydro and keep moving as much as possible. He then says to get off the medication that I am on!! Now we are more than happy to take on new things but the medication that I am on has been done so with the utmost care and attention by one of the best pain management specialists in this country. We ask what can we alter it to? His response, Panadol Osteo!! Are you kidding me!! Panadol Osteo is for bone issues I do have bone issues but I do have nerve issues to. You see mother in law was on Panadol Osteo the quantity was considered very much under the umbrella of MILD pain. I have been under the umbrella of SEVERE pain for a very long time now. I explained that I was put under the medication after a Ketamine infusion and again he says go on Panadol.
We had organized an appointment with the pain specialist the next day so we were very much going to discuss this with him. We had to see him as my pain levels are going up again and we are worried.
When we saw the pain specialist we told him what was said, you see it is in our best interests to try to do the best possible thing. I am certainly by far a hypochondriac that keeps gobbling down pills without asking my doctor “do I still need this”? It was then explained the negativity that a lot of Dr’s have about the type of strong medication that I am under. They have the attitude that unless proved otherwise people are all addicted. The long-term Neurosurgeon that we are under had the very same attitude and he referred me to the pain specialist and now that I am being monitored all the time he is more than happy with the way we are doing things and the way that things are going. So I anticipate that the guy that we saw earlier this week, given the chance of history and knowledge of me and my situation he would have a very different point of view.
During the appointment with the pain management specialist he has put me on one more tablet. This time and antiepileptic, though I do not have epilepsy it has been proven that antiepileptic medication has been very helpful with nerve pain. Unfortunately one of the side effects is tiredness!! Like I need that!! Arrgghhh!! I guess though it is easier to put up with being tired than what it is to deal with pain. It has been such a long and hard road and we have so much more to go. I try very hard to keep my chin up even on the days that are more painful. A positive approach is well proven to help alleviate pain, dwelling on things will only make things worse.
It has not been easy to get to a level that we would consider as “stable” medication has so many side effects that sometimes it’s almost better to not be taking certain types, basically the less of the two evils. I have had days where all I did was lay in bed crying, it’s certainly not a way to be living. I have had medication that has made me put on weight, this is also not so good as the more weight I carry the more pain I am in, thus needing more medication, it’s just not worth it. If anything the least I can take the better it is, especially for the long term. I do not understand why some people would WANT to take they type of things I need to take, you see being tired, having a lack of motivation, difficulty with heat, these are all things i could do without. Though do not get me wrong, I do fully understand that addiction is a very serious issue, but for me I would rather be more mobile, awake and alert than not. The above antiepileptic didn’t help and I ended up stopping taking it, later speaking with both my GP and the pain specialist in regards to why (I was putting on weight) they agreed. It’s not been easy but I guess that how things are is as best as what they will be. Already I am sleeping with a fan literally cm’s away or the air conditioner on. Its horrible waking in the night overheating, especially when the room is only 20 degrees. We were incredibly happy when we went on the Food and Wine cruise and discovered that the air conditioning in the room was amazing. We had spent a night in a hotel in Sydney and both Bill and I were dying with the heat!
It’s not easy for me to travel much, long distances in particular are the most difficult, last Christmas during a road trip was a testament to this, we were forced to go on journeys longer than was agreed and planned for on the legs of the trip that were longer than anticipated I was ill. It’s hard to get to somewhere beautiful and spend the first day resting because you are feeling unwell and then the following day you have to leave again. It really was unfair to say the very least, not that our guests cared, because after telling them several times about what I could not do, after them reading this blog and full well knowing what is wrong with me, they said “so it’s just car-sick”. Seriously??!! WTF!!
The world does not revolve around me, nor do I expect it, but I believe when I explain what I can and cannot do this should be respected, after all I did everything I possible could to do to cater to their needs. Its so tiring really and frustrating for things such as this to happen, I am not trying to make other peoples lives difficult by any means but in the same token I know my limitations and I try to keep within them or I suffer the consequences, consequences I know all to well about. I wish that I could travel long distances at a time, I really do, but I cannot, I won’t ever be able to, so things like road trips that are long distances are really out of the question. Not that this bothers Bill and I as we love to step out and smell the roses, we don’t need to rush to get to a place and stop still. FIL says he cannot travel far but last year they travelled to Port Hedland and back in less than two months, (left early December and returned 1st Feb). Though wonderful for them it’s a trip that we could not do, nor would we, there is just SO much to see in-between all that, we would want to do a trip like that over at LEAST 6 months. In fact when we are up to doing our road trip around Australia we anticipate that it will take us at least one year. This is a beautiful country and there is so much to see. Bill and I have done a 7 week trip (so about as long as PIL’s trip) and we went to many places but only got as far as Tamworth. In fact if we did not have such wonderful friends in Tamworth we would not have gone so far up. We like to see this beautiful place we call home, but only at a plodding pace.
My biggest concern now is as my abilities have deteriorated going on a long haul flight may be impossible, though we will be able to break it up into smaller legs. I guess that this is not too much of a concern because this means that we will end up seeing more countries!! LOL We are going on a cruise next year, its a 30 day cruise but as we are on a ship and get to move about I am sure we will be fine. In fact based on this years short cruise we were so relaxed, it was wonderful. The gentle rocking of the boat really is wonderful, the air conditioning of the rooms is wonderful, the food, well that’s amazing and the places that we will se, breathtaking. We have been wanting to do this cruise for a very long time too, it’s going to be a dream come true. One day a world trip we would love to do too but for now, it’s the back yard.
Driving is very difficult too, I can only drive very short distances, most of the time Bill drives, partly because I can’t drive very far and partly because he is the biggest pain in the bum backseat driver on the planet! I am glad that I can do some driving, it’s good to be able to get out and do things, with the medication that I am on and the limitations I have getting out of the four walls is imperative. I cannot understand when I look at some friends Facebook walls and all it is is games, constant updates and posting on others walls. You can clearly see that they are online for an incredibly long time each day and I wonder if they ever see the light of day. Getting out, talking to real people, even just doing something as a bit of window shopping, it does so much for wellbeing. I am constantly telling this to my sister, we have bought he so many things to get her out of the walls she is in and little bit by little she has taken this support on board and little bit by little bit she has become more and more positive. It’s shows in the way she speaks, the way she acts and they way she behaves, it also helps that some amazing people took over where she lives too. The previous people seemed to adopt the approach of let her have what she wants and keep her happy. If she wanted to blob in bed all day, she did, if she wanted to do nothing se did nothing there was just NO active encouragement. Bill and I would have her for a few days and both she and her partner would become really positive and ready to run and it would all be undone. So with the new people there the positive active approach stays and she is so much more better. I want nothing but the best for my sister (all of them really) and love it when we get happy phone calls from her. She now understands my position and understands that life is there to live, do the most you can and stop working on creating things so you can’t. She has gone to many places and done things that she had never done before as had her partner. I think the most exciting was when I was a bit more physically able and we took them on a Aqua Plane ride, I don’t think they stopped talking about how much fun they had for months. You see her partner, he too can err on the side of the “i cant’s” he did not want to step onto the plane not because he didn’t want to go on it but because he thought he “might” slip if he stepped onto it. Every possible caution had been put in place and it was very much mind over matter and once he conquered this he was on the plane and is eternally happy that he went on that flight. In fact he is so happy that he has thrown down a challenge to Bill, to skydive, I think that he knew not to challenge me because the chance of me doing it is far greater than what it would be with Bill, nonetheless one day I believe that it will happen!!
I adopt the approach that it does not matter if there is limitations, work within those limitations and do the best you can with what you have. If people can respect your limitations and not look at them as some sort of hindrance or something negative then that too will go a long way.
21/7/11 another update
Oh wells *sigh* We have the results of the recent scan which we have done and get done every 2 ish years. This time they dug a bit deeper so to speak and found more tumors, in fact a lot more. Its safe to say “riddled”!
Never fear, they are not cancerous or causing more damage than what issues I currently have. It’s the same they can’t operate, if they do it is at a big risk, so safer to let them be. There has been some growing of the existing tumors too but not so that it’s serious. They are not 100% sure if they are new tumours or old as they scanned a bit more than what they have in the past, so they could have been there all along.
So there’s the 18 month update!
25/10/11 another update
So we have been on the same old merry-go-round of doctors and specialist’s. When we got the results of the MRI taken in June/July this year it was suggested that I have a further MRI in the pelvis area, we asked about this and one Dr said, what’s the use, you will just find more of what you have and not be able to do much about it. It kind of made sense, but it’s also a good thing to know, even if you cannot do much about it. We discussed this with our Gp and he said “what happens if it is something else”? This was a bit of a concern, though I was confident that I would be fine….
Well I had a MRI done and there was nothing in the pelvis area, that bit that continues down from the spine, so that was good news. There is fibromas in my hips, of about 2cms, in fact its in the sacral area, an area that looks like all these little holes, well that’s where they are, it’s where I get a lot of pain too. Its one area that I have been told for ages that the pain I have there is just referral pain, so now knowing that there is in fact something there that is in fact causing the pain is good to know; even if nothing can be done about it.
The other part was they found a polyp, yay me to find yet more things!! So as per usual there needs to be further investigation and as per usual off we had this all done. The results of that was a Submucosal Fibroid. Basically nothing really for me to worry about unless it becomes a problem. I did however do a bit of Googling about it and discovered some interesting things. My mother has issues as she got closer to menopause and because of these problems she had to have a hysterectomy. I am curious to know if it was a Fibroid like this one that could have been removed and thus she could have avoided the hysterectomy. Sadly it’s something that I will never know but would be interested to know.
I have not updated this in a long time, sadly the past few months things have begun to go a bit pear shaped. Pain levels rising needing and an incident when I got really confused in the middle of the night and have no recollection. So it was back to the merry-go-round of doctors and tests. A MRI had me at the hospital for hours and I felt like a fried egg by the end. The results where that all was well in the brain department (YAY, I have one, LOL) one growth had grown and I had wear and tear on my hip.
I had always said to the doctors that I had a lot of pain in my hip and they just said it was referral pain so nothing was ever really done. So off to a new doctor and he decided that it was bursitis of the hip. Years ago I had it in the knee so I had a idea of what he was talking about. He suggested an injection to the hip, I can’t quite remember the name but it seemed like a similar procedure to what I have had in the past only to my spine. I was geared for the worst as the injections I had in my spine hurt quite a bit but this was over in no time, needless to say one happy me!!
I did get some relief for a few days, felt like I was walking more upright however pain in my lower back was more intense. I guess the best was to describe it is if you had a sore tooth and someone stomped on your foot, the pain in the tooth becomes nothing in comparison, sort the pain in the foot and the pain in the tooth comes back. *SIGH*
It looks like another Ketamine infusion is on the cards which I am very much not looking forward to but hope that it will be of some benefit. The bonus this time is I will not have the negative energy that surrounded it last time and can just plain focus on me and getting through it all.
So sadly pain has become worse, as always it is a hindrance to the things I want to do and I get more annoyed than upset. I still keep positive and enjoy life, I still listen to my body and what it needs too. Sometimes I do have to rest a bit and take a bit of time out but if that is what is needed to have a good day then so be it! As it is very much looking that we will be moving back to Melbourne we will be closer to the hydrotherapy pools so I will most certainly be taking that back up as it is very relaxing to the body and gets us out doing something healthy