Holidays, MRI's, Neuro and Christmas :)

Hi All 

Its been a long while since I've blogged. Have been kind of busy with a few different things and I guess it slipped my mind. I noticed someone else was blogging and posted the link on facebook so it reminded me I really should crack on with some writing. 

Loads of stuff has gone on. Most of it positive I must say - which is never a bad thing! I'm sitting here trying to wind back the memory to tell you about it all but I'm not having much luck - my memory sucks.

I went away with Sean and his family to Spain for a week in September which was fun. We had really naff weather but we had a laugh anyway. It was great to get to know everyone a bit better. Following that Sean has mostly been away with work in Belgium. So we haven't had the opportunity to do much the past few weeks.

At the harbour in Puerto Buenos, Spain

We have managed to launch a new online business which sells baking equipment and tools for cake decoration. The sales took a few days to start rolling in, but then before we knew it things were really picking up. At the moment there is a bit of a dip but we are slowly finding our way out again, it's all a bit of a price war. The business sells on Amazon so you really have to keep your head in the game to see what your competitors are doing. I am learning a lot I must say. 

As far as health is concerned, I have been relatively stable with my chest for the past 3 months. I am so grateful for the break from hospital admissions and IVs. I still have days where things are really difficult and I'm struggling to even get out of bed but thankfully at the moment that isn't every single day.

Since the drama at the neuro-physio appointment that put me in hospital, I haven't been able to do much physio. This is because the physio isn't keen to get to hands on for fear of causing too much damage since we were still awaiting the results of my MRI. Thankfully they are now back and go someway to explaining the problems I'm having. I have 5 bulging discs in my thoracic spine, a couple more in the lumbar region and my bones are osteoporotic (thin) in the thoracic area particularly. I am obviously pretty upset that there is so much wrong and its going to take a lot or physio and potentially a neurosurgical review to sort out. At the same time though it's a relief to know that there is now a clear cause for my ongoing pain and I'm not such a mystery any more. It's also nice to be able to tell anyone who doubted me that there is a true cause for this. And I'm not some sort of drama queen. A specialist pain management team are going to see me since the review of my MRI so I will be glad if they can offer me some relief. I was told the pain team can offer acupuncture which I would be keen to try as I don't want to be reliant on strong pain meds.

I've also been discharged from neurology in terms of my seizures as he and his colleagues confirmed that the reason for my seizures was associated with gas exchange in the blood (caused by my asthma and the damage it has done to my airways over the years). I am so glad to able to get rid of one specialist at least. I want the most minimal intervention, I don't want too many people getting involved in my care as it just complicates matters. In the past my teams have been keen to get new people involved  for new opinions all the time but they seem to take the same stance as me these days and just keep it to a minimum for my sake. It's a case of too many cooks spoil the broth I'm afraid. One of each speciality is quite enough! The neurologist has contacted my Brompton team so they will put plans in place to sort this gas exchange issue out if they feel its necessary.

As far as my local respiratory team are concerned, I've decided against going back to them as well. The doctor although very nice was not doing a lot. He promised many things, over the years - with the best intentions but he never came through with the goods. I have changed to a different team who I met on an admission a few months back and were very proactive. They arranged my portable oxygen (I had waited for my other respiratory doctor to fill in the paper work for 3 years) within a matter of minutes. This has been a real godsend as far as travelling any distance is concerned. It's small enough that we can just chuck it in the boot in case of an emergency and they have conservers on so a tiny bottle can last about 8 hours. So fingers crossed there wont be any more dramas where we are in the middle of nowhere and miles from any hospital with no oxygen. 

Other than all that, I am in full swing for Christmas and have done a lot of my shopping online this year which makes things a lot easier. I hate aimlessly wandering around shops for hours trying to find something someone might like. Nope! This year I came with a plan. And am pleased to say I have most of my shopping done now.

Will try and write sooner next time..  adios!

PS. Saw this and thought I'd share with my other friends who struggle with health complications.. 

Very true

An unexpected drama at the Neuro physio appointment

Since the Olympics ended things have gone downhill. I'm really glad things didn't go wrong until after the games, I'd have been really upset to have missed any of the action.

As I have talked about in my previous blogs, I walk with crutches as I have hip and back problems. I suffer from chronic pain in both but last week my back pain became much worse. It seemed to gradually increase over about 3 days. I was up all night walking around and was really fidgety as I was trying to get it to a level where the pain was manageable. I had neuro-physio coming up on the Tuesday and that day couldn't come quick enough in my mind because my physio has a knack of reducing my pain by using pressure points to release muscle spasm. Unfortunately when I arrived I was in absolute agony and no matter what she tried it just didn't seem to help at all. In fact, I think it made it worse. I could feel my eyes watering and at one point I was silently crying because I really didn't want her to see me being such an idiot about it all. When she finally finished, she asked me to sit up, which didn't come easily. Unfortunately as I sat up, I projectile vomited everywhere. Thankfully she managed to move out of the way just in time and spared herself. After that I just sat there swaying with my eyes closed feeling really faint. I must have looked like a right numpty!! I told her I needed to lay down as I felt so bad. She called the doctor over from the other wing to take a look and they checked everything. I had really low blood pressure and my oxygen levels weren't great. I think the stress of the pain was causing all this. Any who at some point during all this I did actually pass out, and woke up to find an ambulance crew stood next to me. I really didn't want to go in  but they weren't giving me any option, and with that much pain it didn't look like I had a choice, it wasn't like I could walk out of there. They took me to one of the local hospitals.

I was seen really quickly at the hospital and given some painkillers to try and ease the pain before they examined me. I never understand why they always try and give paracetamol  (the weakest painkiller in a pharmacy), to a patient in severe pain!?! As was expected, paracetamol did sweet F A, so they gave me some oramorph aswell. This didn't help either, as I use this at home intermittently for the pain and I have a certain tolerance to the low doses which means I don't really get a lot of relief from it. Eventually he offered me some IV morphine but as  good as this is as a painkiller, I knew he would never get an IV in me. I always go through the same battle with them time and time again. But I did have to eat my words when he got one in first time, albeit in my little finger! I couldn't knock the fella, he did a good job there. Perhaps my veins have had a chance to heal during the period I've been well.

The doctors at the hospital were concerned about a fracture of one of my thoracic vertebrae. Mainly because I have some degree of weakening in the bones due to steroid dependency for the last 15 years (for my lungs). I had a thoracic x ray and it was clear of a fracture but the x ray managed to incorporate the first 3 lumbar vertebrae as well and the doctor told me he could see that there was literally no space between them, they were sitting one on top of the other. As you can imagine bone rubbing on bone can be incredibly painful. I didn't want to stay in the hospital as I had an appointment with my own doctor/GP that evening and my physiotherapist had had a long discussion with her about putting me on a new medication called Gabapentin which is a drug that directly targets nerve pain. This seemed like a good option as the analgesics I've been on until now have a wide variety of uses and so don't necessarily act on the areas where I need them to. The doctor wanted me to stay as the analgesics weren't totally relieving my pain, but I figured that I'd only be stuck in there for days on end, being given loads of opiates, only to leave for home with no better idea of what was going on than when I came in. As it was, by the time we left I was too drained and in pain to get to the GP anyway. So Sean called them and explained the situation and asked if we could pick up the aforementioned new drug prescription so that I would be able to have some relief that night. They agreed but we needed to wait to hear back from the doc that night as he wanted to talk to me. But,  low and behold..... he never called back so I was left with NO pain relief that night. I was so angry and so upset. I was in agony and this just wasn't fair.  Thankfully the next day I was able to see my own doctor who gave me a script for the garbapentin and also played around with the dosages of my other medications, adding in tramadol as well. This has really helped over the past few days and I have finally managed to get some sleep.

The physio visited my house a couple of days later to see how I was doing. I was using my oxygen a lot as the pain killers were affecting my breathing. But without them I would have been climbing the walls so it was a necessary evil really. She was a bit concerned to see me laid up in the bed, still in pain and quite knocked off by the medication. She decided not to do any physio work that day as I was still in a fragile state and she didn't want to risk aggravating the injury. She consulted with the GP and together they decided they want me to have an urgent MRI on my entire spine and have referred me to see a neuro surgeon at a clinic in Dorking. They think my symptoms match with a slipped disc which may or may not need surgery (if that's what it is found to be). This has worried me as it seems pretty serious stuff but I am glad that they have been proactive in trying to find a cause for this as throwing drugs at it and treating it conservatively (as has been a habit in the past) is really not a solution.

I'd really like to start a family at some stage and so having long term issues with my spine and hips is a big worry for me. I am worried the pressure on my spine and hips as the baby grows will be majorly problematic for me and the  baby. I don't want the pregnancy to be one where I am laid up for 6 months of it in pain. That wouldn't be good for the baby. I asked the physio about this today. I know its not a pressing issue for right now but it was just something that was nagging me and I wanted to ask her about it so as I knew what to expect in the future. She really put my mind at ease as she said both her and her sister have had this injury and they were both able to bare 3 children each. She said that they actually found their back problems improved during pregnancy (who'd have though that!?!) as the muscles around the back relaxed to accommodate the babies growth. Apparently it's a common occurrence. So thats one less thing to worry about anyway. I'm waiting to hear when my appointment for the MRI and Neuro surgeon is. I'll no doubt blog about it more when I have them - should be happening in the next two weeks.