Miracle Drug Day 21: A discussion about doctors

I have a sore throat and it’s been that way since Friday night. It’s now Sunday morning. I don’t have a voice anymore. Actually my voice comes and goes depending on how well the pain killers are working.

In the five page instructions that came with Miracle Drug it says tell your doctor straight away or go to Accident and a Emergency if you have a sore throat. Ok, I’m going to use common sense here and not rush to the hospital. However, when I saw him a week and a half ago he was all worried about me getting sick because I was showing signs of going down with something. I felt better for a few days, now I’m having signs of becoming “regular” type sick again. I think it is a lot about being run down and tired at the end of a year and after a saga of searching for a new diagnosis and having a flare.

I am getting really tired of this ongoing question about whether I should go see the doctor or not. It also says go to the doctor if you bruise easily. I always bruise easily. It has been worse lately though which may be because of Miracle Drug. I hit the inside of my wrist on the guillotine last week and I got a lovely big black bruise out of it. At least I got the bruise while cutting paper for my students for their art activity, not while walking past a table and hitting it, or like in the old days, having a battle with my ex.

I don’t feel a fever and I actually feel ok body wise. Not spectacular like I can go do anything I want, but ok like I might have a shower and go somewhere later. My mind is also quite relaxed and it is thinking pretty clearly right now. I’m going to defer the idea of going to see the doctor.

This is not a good week for getting sick, I have a lot of busy days at work coming up. So if it worsens I will have to get to the doctor quick smart. He will be grumpy if I end up going because it gets worse and I have had this sore throat for days, but I’m not rushing up there. Unfortunately if it worsens I will wish I went up there sooner.

I remember years ago when I would go to the doctor (GP) maybe two or three times a year. I would go when I had the flu and/or sinusitis and/or a chest infection. Oh, and I would go for my biannual women’s checkup. Anything else I just put up with because it had been mentioned before and nothing had come of it. Like migraines and toes swelling and fatigue for example. All symptoms that could have pointed to an illness, but they were never investigated further. Those were the days when symptoms were not debilitating. How things have changed.

Those were the days when I went to any doctor that was available, I told him my problem, he looked in my mouth and ears and listened to my chest, he told me what it was, I accepted what he said, took my prescription, had a day or two off work, and that was that.

Now my visits are more like an ongoing story. They are all linked together with the same theme and the same characters. There’s the inevitable checking of blood pressure. There’s the catch up on latest symptoms and shared reading of the letters from the specialist. There’s the discussion about medication and blood testing and the printing of prescriptions.  There’s a little banter between the characters, some sharing of personal information, then a discussion of when they will meet again.

This is a relationship happening here, between doctor and patient. For the first time since I was a child I want to keep seeing this same doctor. This one is a keeper. I can’t tell you how many different doctors I have seen in the last five years since I returned from the US, because I cannot remember, but it has been a lot. Finally, when I saw this guy, he listened and he tried things, even though they might fail, which some things did, he had a go, and he was smart enough to find me an excellent new specialist rather than send me back to my previous one. He stumbled through and he got results. He also makes me rest, which is important. He doesn’t annoy me about things like water exercise, which there is 0 chance of me doing unless I build a warm spa in my backyard. He just deals with the body and it’s symptoms. Sometimes I argue with him and he puts me straight. He thinks a lot. How often do you feel your doctor is mentally engaged in what he is doing? That is rare in my world. Doctors seem to find simple answers and then they get rid of you. Quick in, quick out. But I don’t feel rushed with my doctor and I know he tries to do what is best for me.

I feel a little sad that I have crossed over into the regular contact with my doctor zone. I used to think that in this zone there are old people and people with terrible illnesses. So, either I have become old or I have a terrible illness, or both. Maybe there are young sick people in this zone too? I don’t want to be in this zone, but it is what it is. I’m in the zone and I don’t think I will ever get out of it.

Acceptance of a Chronic Illness

I thought I might feel better after three and a half days rest but no I don’t. It is sinking in what I am dealing with here. I have two illnesses, both of them awful in their own right. Neither will kill me, good, but both will make my life extremely difficult. Today I heated up and flared up and slept and then felt worse. Now, it is 2.30am and I am just feeling ok. I should be asleep now. I have plans in the morning. Fatigue and pain are tag teaming and sending me desperately crazy. How am I to continue like this? How am I to work like this? Where is that bloody book I ordered with all the answers (or so I hope)?

I am going to think about the stages of acceptance of an illness and how I am going to rise above all this illness and disease. I had already gone through this with my fibromyalgia diagnosis two years ago. Now I am back doing it all over again with the diagnosis of inflammatory arthritis that is most likely more specifically psoriatic arthritis if you ask Dr Me. This diagnosis has occurred right in the middle of a fibro/arthritis flare, a flare that is not appreciating my new medication, otherwise known as miracle drug. So here are the stages. Reflection time.

Stages of Acceptance of a Chronic Illness

A medicated life

It is concerning that medication is the thing that keeps me getting up and participating in life. I would say I have a love/hate relationship with it right now. Medication that is.

The reason I love my medication is that it does positive things to my body that I cannot do myself, like keep my blood pressure down, dull the throbbing pain I feel in my feet and hands and stop the nerve pain all over my body that drives me crazy. Because of it’s help, I can go to work and do things in my life other than lay in bed or sit on the couch.

The reason I hate my medication is that it doesn’t fix my pain completely and it gives me all sorts of random side effects, one of which is to make the pain worse (yes I know, that is ridiculous) and make me fatigued and foggy. So, sometimes I still do end up in bed or on the couch feeling very useless.

When I feel like that I wonder if there is any point in taking my medication at all. However, if I think constructively I know that the extremity of the pain and fatigue without medication is much worse than when on it. In other words, my medication has a positive effect overall. Plus, this new medication, the one I am currently referring to as the miracle drug in other posts, should have a lot more impact in a positive way, in a few weeks time. Hopefully.

Sometimes I need to take more and more pain killers to get me going and keep me going throughout the day. This is not a good habit to start. So I’m stopping with that.

However, can it be seen that all this taking medication is not only a reliance on medication, but a slow slide into becoming addicted, physically and mentally? If you have to take a medication, and are not allowed to stop it abruptly due to the side effects, then are you not already addicted anyway?

Let’s explore…

Medical definition of addiction:

Compulsive physiological need for and use of a habit-forming substance (as heroin, nicotine, or alcohol) characterized by tolerance and by well-defined physiological symptoms upon withdrawal;

broadly : persistent compulsive use of a substance known by the user to be physically, psychologically, or socially harmful—compare habituation

Medical definition of habituation:

1. The act or process of making habitual or accustomed
2a. Tolerance to the effects of a drug acquired through continued use
2b. Psychological dependence on a drug after a period of use—compare addiction
3. A form of nonassociative learning characterized by a decrease in responsiveness upon repeated exposure to a stimulus

Thank you Merriam-Webster, it appears I had the wrong word. I am not becoming addicted, that only relates to harmful drugs (hmmm, that is subjective). I am becoming habituated, as definitions 1 and 2b above explain.

Right now I am 41, will I have to keep this up forever? Probably yes. When I was last at the rheumatologist, he said that I would be visiting him for ever. Thats like 30 to 40 years or more. That’s ominous. And, that’s a lot of money.

I guess I can’t think about whether I like this new reliance or habituation of medication or not.

It just is. Move on.

Miracle Drug Day 9

My poor body still doesn’t know whether it is sick with a particular type of sick like a virus or infection, or just the normal fibro sick, or having difficulty with new meds sick.

I can’t tolerate the pain without either 1. Taking a lot of masking medication that makes me act loopy, or 2. Sitting and resting.

Activity makes me crash, the urge to go to sleep coming over me like an unstoppable wave as soon as I sit down. Many afternoons in the last week have involved me sleeping after work, waking up with extremely poor concentration and not being able to do the administrative work at home that I need to do in order to keep up deadlines at work. The worst thing about this is that other teachers are relying on me doing my tasks in a timely manner so that their lives run easier as well.

Today I decided to stay home from work. This is a difficult decision for me every time I have to make it. Fortunately I have not had to do this many days this year. Last week on the Tuesday I was so vague and unwell for most of the day, trying to ignore my pain and rickety body while also trying to engage my students in quality learning. Today I thought I would go see my GP and see what he thinks about my current level of symptoms.

 

My GP  was impressed that we have a new diagnosis from the rheumatologist, although neither a record of that nor my results from the MRIs have arrived at my GPs office yet. He is worried that I am coming down with something as well and with my immune system at 0 he said I need to stay home and rest for a few days. He also told me to cut back on the anti inflammatories (whoops).

I am always happy for rest days, especially when their timing is most helpful. However missing work means I miss a lot of the life of the school. The goings on at work keep me inspired and motivated in daily life. We are starting to plan out next year. That is exciting and challenging. We are finalising reports. That is arduous, but engaging. I have a lot of difficulty explaining why I am having the time off, even though it is Dr directed and I need it. I work unwell way too many times, many people don’t really get that and I don’t communicate my needs very well.

Knowing I have the next couple of days off takes the pressure off me for a short while and I am sure that will help. I just have to resist the urge to try to do things in that time that are not restful. Except tonight, tonight I have some work things that have to be finished by tomorrow morning. It might be a long night.

Miracle Drug Day 1

Miracle Drug Day 1:

The miracle is that I am still alive.

The side effects are lining up to be heard. I didn’t think it possible, but if feel worse than before, especially with the pain. For a drug that is supposed to fix the problem, it’s funny that the problem suddenly got worse. I am getting weird shooting pains that I haven’t had in a while, making my whole body jump. I haven’t had them so much since getting my first miracle drug that has now been relegated (by me) to just a regular drug.

Issues have also moved into my mouth and my throat. If I didn’t know any better I’d say I was getting sick, like what others say is “really sick”, you know the type of sick that normal people get, like the flu or chicken pox or something. At this point I’m not sure if I am getting “sick”, having a flare or having side effect issues. What I do know is that I felt so bad that I decided to order regular pizza, not gluten free, and garlic bread and Coke. (Whoa, now that’s crazy living right there). I guess my body is crying out for something. Maybe an immune system boost? With pizza?

I have this pretty cool thing to teach in Art tomorrow and I don’t want to miss the day because I’m feeling crap or getting sick. And then there’s the problem of a Dr certificate, I don’t remember how many days I’ve taken without one. If I am sick I will have to go see him but I’m sure it’s really the new rheumatologist guy who I should contact if these symptoms continue carrying on. I’m just not that good at doing all that caring for my stuff stuff. But there’s no one else to do it for me.

Drumroll… a new diagnosis…

I went to the rheumatologist today with my insides angry and worried. This is the third time in five years I have tried for a diagnosis. I have never been satisfied with the answers provided to answer the myriad of symptoms I experience. I know I have Fibromyalgia, and medication is working to minimise my nerve and muscle pains. Recent elevation of pain in my right leg in particular led me to bluntly tell my GP some weeks ago that I wanted my foot pain solved. After X-rays showed nothing, he decided to send me to a new rheumatologist. Which led me to more blood tests, X-rays and MRIs of a foot and a hand, over the last couple of weeks.

Apparently certain MRI radiologists know how to seek out and find signs of certain illnesses and you have to go to one of those places and pay through the nose to get top quality tests done. Funny, but the hospital where the rheumatologist’s consulting suite is apparently has a leading MRI department. So I have now become a regular at a private hospital on the most plush leafy side of town. I can now claim to have found a favourite 2hr free parking spot outside the mansions of a privileged few and dream what may lie within.

Anyways, the big new is… THEY FOUND SOMETHING. The radiologist report of my foot was scathing. Significant inflammation it said. After a discussion with my new rheumatologist I received a satisfying diagnosis for my symptoms… Inflammatory Arthritis.

The Doctor called me interesting, that was the word he used. I am interesting because I have both Fibromyalgia and Inflammatory Arthritis. All I could think was, I knew it, I knew it! Finally my complaints have been proven justified. I knew there were different things going on in my body. I suspect that if he said today (like other times before) that the tests showed nothing, I would have become quite emotionally distressed. Being told I have Osteoarthritis four years ago was a dud diagnosis, now found wrong. Being told I have Fibromyalgia two years ago made sense but was difficult to integrate into my busy life and it disturbed my mind a fair bit for a while. The new diagnosis made me happy. (Strange, but true). The best thing is, I can now try medication that should make a big difference to how much pain I have to endure daily. I really hope so.

Cross fingers that this is third time lucky and I never have to go through this uncertainty again.

Testing times

Currently I have been undergoing diagnostic tests to see if perhaps another illness could be added to my list of complaints. One might think this is a productive process as information will come from these tests which can be used by my rheumatologist, that can inform treatment. Yes, on paper tests seem like a good idea. But in reality, I think tests are becoming more and more a bad idea. For me anyways. Here are five reasons why:

1. I am hypersensitive to pain. That means that my body receives pain about five to ten times what most other people feel. Therefore, “You will feel a little sting” means nothing to me. With my body, there is no little sting, especially when you are prodding about trying to find my deeply hidden veins with a needle.

2. Tests take a while, results take a while, appointments take a while. Living in waiting mode negatively affects your mood, your mental state and your capacity to stay positive. Each appointment leaves me flat like a pancake and I can feel depression hanging there just waiting to get in.

3. Often tests don’t show any conclusive results anyways.  Unfortunately, just because it can’t be seen in testing doesn’t mean it’s not there. Possible waste of time, money, pain and effort. Did I mention that this is the third time in six years I have lined up at the rheumatologist for a diagnosis?

4. The doctors are lovely, the nurses are lovely, the staff are lovely, but there is not getting around it, doctor’s surgeries, pathology offices and hospitals are full of sick people.

This last point really hurt me today. I am very sensitive to others’ feelings, so even in my fatigued zombie state I did not miss two key signals today. The first hurt was when I was in the MRI waiting room, waiting my turn. The lady before me had gone in to be tested and had left behind two middle aged sons. After some random banter they started talking about Mum’s tests and the word inoperable came out. That word made me sad. Sad for the lady and sad that the world has this word.

The second signal came when I was redressing after my MRI was done. Which, by the way the testing lady said I stuffed up because my leg twitched and moved before the contrast went through. At multiple hundreds of dollars, this better not be true, especially with the amount of pain I was in today. The second signal was impossible to miss. Somewhere in the passageway in the pathology area a small boy (he sounded maybe seven or eight) was screaming. Screaming in pain and desperation begging for whoever was trying to do something to him to stop. “Stop it, stop it, don’t, leave me alone” type screaming with full volume and distress. That made me upset. I silently prayed that this boy’s discomfort is short lived and his illness is acute such as with an injury rather than chronic and/or possibly terminal. I am sensitive to others’ emotions and with this being a child, hearing his pain really hurt me inside.

5. Situations like this highlight the empty space beside me. Having a partner to support me in stressful times would be nice. Everyone else seems to bring someone with them in these places.

Perhaps it is third time lucky and all my symptoms get categories finally, and I don’t have to do this ever again. I can only hope.