April 2006
It all started back in April 2006, normal cold, dribble nose and feeling lousy. I’d had it for a few weeks and figured I’d been lucky up till now as everyone else around me had picked it up. I hadn’t had a cold in a while and was normally a fit and healthy person. My usual routine would be to go for either a walk or the gym in the morning before work. I was working full time as PA to Mayor and CEO in local government which I enjoyed. I live in a small town and the gym is only a couple of blocks away from where I live with my partner Gavin. Anyway the cold didn’t go away after being prescribed by the doctor 3 different types of antibiotics.
June 2006
By the end of June and after having a couple of days of work I started getting this terrible pain in my face, teeth and head. I had hot sweats and my feet felt like they were wringing wet. I was 51 and figured the sweats were probably the start of menopause. The pain was unbearable and I ended up taking a week off work, unheard of for me. The doctor thought I had sinusitis and made an appointment for me to visit an ENT specialist.
August 2006
The ENT specialist sent me off for a CT Scan which came back with cronic sinusitis. My eyes were also extremely sore and felt like I had rubbed onions in them, so my ENT specialist sent me to and eye specialist, who found no problems with my eyes other than dry eye and prescribed drops.
October 2006
I received a call from my ENT specialist to say he suspected that I had WG and he would book me in for a nose biopsy straight away. I of course had never heard of Wegeners disease so looked it up on the internet and couldn’t believe that I had picked up something so horrible, but wasn’t too worried as I figured I could beat it, after all I was fit and healthy! A couple of weeks off work after the nose biopsy but there was no real improvement although things had started to calm down by now except for the very sore nose to deal with. The biopsy came back inconclusive but with a positive CANCA result. Had a lot of time off work over this time, would go in but come home most afternoons as I just could handle it. I was living on pain killers to get me by.
December 2006
By December I had blocked ears and conjunctivitis. Put on another course of antibiotics and eye drops. The conjunctivas went but the blocked ears continued. Other than that though January wasn’t too bad and I thought things were coming right. I did a lot of bike riding and thought life was pretty good again except for the ears.
February 2007
We went away in our camper for a week up north and were only home a couple of days when things started to deteriorate again. I started getting a constant cough, sore eyes and just feeling horrible again. Blocked left ear on and off.
March 2007
Saw Dr re cough and blocked left ear, mentioned sore back but it wasn’t bad so it was only in passing. He prescribed antibiotics. Saw ENT specialist re blocked left ear.
End of March I flew to Christchurch for a conference and ended up in hospital as my back pain had become unbearable. I couldn’t sleep from the pain or walk, plus I had pain in my buttocks, groin and wrists. My groin had also gone numb to the touch which was a real worry. The hospital took blood tests and back x-ray but all came back clear. Prescribed tremadol and panadole for the pain. The tremole helped suppress the cough and helped the pain. We had planned a weekend at the end of the conference with Gavin meeting me on the Friday night, but instead I stayed in the hotel bed sleeping off the pain until it was time to fly home on the Sunday night. I needed his help to walk to the plane, but it was so good to get home.
The cough would come back when I tried coming off the Tremole completely and I felt like I had a bad flu, but the pain in my body decreased. Its was still there but a lot more bearable. I was feeling really isolated because of my hearing loss as unless I was only speaking on a one to one basis I couldn’t make out what people were saying. I had to see their lips move to make out their words. I spend a lot of time by myself. My partner Gavin has been supportive through all this and I feel so bad as I feel its not only the person suffering the disease but partners and family all suffer the same sentence. He said the other day he wishes his old Trish was back, he said it in a loving way but I felt a terrible pang. My friends are really great also, but I don’t want to burden them with my problems all the time. It seemed like the only conversation I had with people were health related!!!!
April 2007
Made an appointment at the World Health Clinic in Taraunga as this had been suggested to me by a friend whose husband had had cancer and was treated there.
So we headed off on the Saturday to Tauranga for a few days in the camper. I was still completely deaf so the conversation was pretty limited in the drive up there.
My appointment was for the Monday so we spent a lovely Sunday checking out the sites of Tauranga. My breathing had got worse when exerting myself which was really noticeable when we went for a walk along the beach at Tauranga. I was like an old women struggling.! We went for a small bike ride and I struggled with this also. Woke up on the Monday morning with vertigo. Never suffered this before and thought no not now, but it only lasted about an hour after waking and I was ok for my appointment. I had my consultation with John the Isopath/Homeopath and his wife who was an acupuncturist. John told me I had flukes and gave me some homeopath medicines to take for the next 10 days. Was told that the first 2 to 3 days I would feel quite fluey due to the withdrawal of painkillers, coffee, tea and alcohol, and the toxins coming out of my body.
The next day Tuesday I walked over to have my shower at the camp site. I was still deaf not hearing any sounds around me. While I was in the shower my ears made a noise and suddenly I could hear birds chirping and the water running from the shower. I was so overjoyed my hearing had returned, it was still not great but at least I could hear. Also the pain in my wrist had almost gone and also the pain in my back. I had only just started on the medication from John the homeopath so figured it wasn’t that that had improved things but felt that perhaps the acupuncture had helped. I went off all pain killers and coffee and alcohol as prescribed by John and started taking my homeopathic medicines. I was still taking my medication for my thyroid. A few days later still felt very exhausted and felt like I had a bad flue, cough back again. This lasted until the end of April when I felt a little better, but still had a bad cough.
May 2007
Still feeling lousy with flue type symptoms, blowing nose (green gunk) and spiting out green flem. Still had cough especially at night. Feeling like it was all going to my sinuses again. Ears were still ringing and blocked. Completely exhausted would have loved a good nights sleep. Started another course of antibiotics. Flem was still gluey white and nose had cleared up. Went back to work, feeling pretty good. Next morning I felt like a whole new person. Life is great. Woke up and bounced out of bed, no pain anywhere. Amazing. Hoping this will last.
Went back to Tauranga to visit Homeopath and acupuncture at Healing World again. Still feeling not to bad, but still had a problem with breathing when doing anything strenuous. Best I had felt for a long time though. Got medicines off Homeopath but still on antibiotics so continued with those and started the medicines when I had finished. Still had a cough that didn’t want to come up which was worse at night.
Started second lot of homeopath medicines. Still have dry cough and difficult breathing when exerting myself. Still coughing up flem and blood (usually blood only about once a week). A couple of bleeding noses and blood from my throat also. Doing a lot more around the house, and even went for a small bike ride today. Feeling ok still.
June 2007
3rd lot of Homeopath medicines. Still have dry cough and difficulty breathing, flem and blood. Started going to the gym to try and help my lungs. Still get blocked ears through the day, but hearing is fine. Appointment with Rheumatologist. Organised for me to have blood test and urine test. All came back good.
July 2007
Appointment with ENT specialist. Hearing test – good, blood test taken, camera up nose and down throat – good. He made an appointment for CT Scan. Breathing is still a problem and so is the cough, flem and blood Get tired easily. Blood test and urine tests came back good.
August 2007
Had CT Scan plus dye through veins. This was only for head and throat. ENT specialist visit. Breathing is really bad now, can’t even walk too far. Lung Function Test.
October 2007
Holiday in Aus. Felt pretty good except felt very puffed up and started having problems with my feet and joints. Breathing still not good.
December 2007
Went to Dr to see if I could get something for my puffiness and sore joints. Doctor gave me some fluid tablets and anti-inflammatory tablets.
My feet and joints are getting far worse. Wake up in the morning and can hardly walk. Feel better over the day after taking anti-inflammatory tablets, but feet are really swollen. Going to the doctors today to get them checked again.
Progressively getting worse. Everything is sore and swollen from my throat to my toes. Every day is a struggle to get through. Dropping pain killers to get through, not sleeping because of the pain and crying every morning. Life is a misery at the moment. Just taking one day at a time. My breathing has become very bad and is a worry
January 2007
Went to Emergency hospital couldn’t take it any more. I really thought I was dying. They put me on iv cyclophosphamide and methylprednisolone pulse. Felt wonderful in just a few days. My swelling had gone down and my breathing was nearly normal. My ESR had dropped from 81 to 26 and CRP from 189 to 23.
Felt really good for the first week, just about felt like running. Spent a full day in the garden one day and went to an organics festival which was 2 hours travel, but felt wonderful. Perhaps I over did it as my legs were still quite week and sore by the end of the day and in the morning. Still on prednisone and take a couple of panadole to help my legs.
Back to Lower Hutt hospital for iv cyclophosphamide and methylprednisolone pulse.
Felt really bad for the 1st week, tearful, still had pains and very depressed.
Went away on holiday on the 17 March and within a couple of days felt a lot better re depression. Still had pain in the morning until the prednisone kicked in, about 2 hours to kick in. Tried a short walk along Queen Charlotte Track. First ½ hour was ok, but limping with sore feet and legs and shortness of breath for the last ½ hour. Going to the toilet often and yet not seeming to drink that much. Bowel movements more frequent and erratic. Going down hill as far as pain in the morning on the second week of holiday. Still running to the toilet often.
Back to work.
Decided to take anti-inflammatory pills twice daily to help in the mornings and nights. Woke up on 4 March with little pain but my left foot was tingly, numb and sore. Went to go for my usual short walk up town for lunch, but decided not to after leaving the office. Just didn’t feel up to it. Felling puffy and large again.
Went for more iv cyclophosphamide and methylprednisolone pulse but couldn’t do it as I had a urine infection.
Hospital for more iv cyclophosphamide and methylprednisolone pulse.
Afterwards had to walk from Emergency to my car parked on the other side of the hospital. By the time I got to the car I was huffing and puffing like an old women!!! I was hoping there would be some improvement. Maybe in a few days.
Felt a bit depressed after chemo but not as bad as last lot. No improvement to my breathing but no pain in the mornings as long as I keep on the prednisone. Started getting numbness in my feet again.
Numbness in my feet and aching in my buttocks and legs. This time it was more in the top of my right foot rather than the left although the left is numb also.
Suffered a sore shoulder for the next few days, Started on painkillers Diclofenac tabs 75mg each day usually mid afternoon when it starts to get worse. The pain creeps up and feels like the muscle is enlarged. I’ve had this problem before so not sure if its part of the symptoms or not. Still got numb/burnt feeling/sore right foot but the pain hasn’t been so bad at night, probably because of the pain killers I’m taking in the afternoon.
Back in for iv cyclophosphamide and methylprednisolone pulse.
Have been feeling really bad since last lot of treatment. Can only walk as far as the bathroom to the lounge and I’m completely out of breath. I feel like I am back to square one again although the aches in my body are not as bad as they were back in December although that’s due to the prednisone.
Back in for iv cyclophosphamide and methylprednisolone pulse. Feeling really awful about going as I don’t feel very hopeful. My specials has suggested that if after the 6th pulse treatment there is no progress he will start me on the pill version. He had used the other option as there were supposed to be less side effects so now I am keeping my fingers crossed.
I have reduced my working days down to 4 days with Wednesday off to try and rest. I am lucky I have good work mates who understand and they have taken some of the burden off my job by passing on to others. Still feel bad about it though and don’t want to have to give up altogether as I need to have something to get up and go out to. I’m lucky I can drive right up to my office so its only a short walk and mostly my job consists of computer work and answering the telephone so not too much walking. I find speaking on the phone hard as I keep having to take breaths between a few words. I sound like Darth Vada!!! Anyway I am keeping everything crossed and would like to thank everyone for sending in their stories. Reading about every one else’s troubles I feel I am lucky in comparison, as I am not nearly as bad as some and I send my best wishes for a quick recovery to everyone who is feeling really low at the moment. Thank you also Andrew for starting up such a wonderful site. I have already found there is more info from the stories etc than I have found on previous sites and it helps to has helped me understand that the side effects are normal and that I’m not on my own. I guess I didn’t get involved earlier with any other sites as I lived in denial for a long time and hoped that it was just an awful nightmare. I look foreword to hearing from anyone who would like to share information. Its pretty lonely with this disease isn’t it, but I guess we have to keep our chins up and taken each day/week as it comes.
All the best
Trish
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