Saturday, 18 June 2016

Lemons equal Lemonade . . . or Bitterness

It's June - Here in New Zealand today is Queen's Birthday Monday. The day we remember Queen Elizabeth's birthday. Her actual date of birth is in April. It's a public holiday and many people have the day off work.

Later today I'll be heading out with Locket, but for now I thought I'd do some writing. I'm sure I'll need a break at some stage and can pick it back up when I get home again.

I've been doing a lot of thinking since I last posted. I thought about closing both my blogs down. They serve different purposes, but as anyone who has a blog knows they do require some effort. For me they do anyway!

I've decided I will keep them both going. With some changes though. I'll post when I can, and it may be that the attention will be more on one than the other for a space of time. My sewing blog is really to catalogue what I make, how I make whatever is under construction etc.

This blog though is about life - my life, and those who are a part of it. So it will go more deeply into the personal. Thoughts, feelings, ailments. All that makes up MY life. At times I may allude to an event or period in my life but not go into detail. This is because some happenings in my life, or within my family, affect others. It may affect me, but not be my business to share fully. Another area is my health, I may share details that are personal. So, fair warning, if you think it will make you uncomfortable please don't read.

I will try my best not to offend, upset or hurt anyone within my family, however please always remember that these are my thoughts and feelings. I don't tend to wear my heart on my sleeve, but I am as human as the next person. I think  . . . . wait  . . . . yup, I just pinched myself and it hurt . . . I'm human! If you do read something that you don't like please talk to me about it. :-C

O.k. there are people who are talkers/sharers of the minutest details of their lives, so it seems to me. Then there are those who keep a lot to themselves, think it all through and eventually may share their thoughts and feelings with a trusted few. I guess there are those in the middling ground as well. I'm the second sort. I'm sure I get up some peoples noses as I have a tendency to be a bit of a Pollyanna. If you don't know what I mean watch this short clip from one of my favourite movies. I do try to find the positives in life, even in the midst of the troubles that come to us all.

Life has been topsy turvy a lot the last few years. One thing for me has been dealing with health issues. I thought I was fairly well. I had been anaemic on and off for quite a few years, I was nowhere near as fit as I'd like to be. Then in August last year I had a major medical event. If you've read my blog before you'll know what I mean. If not you can read about it here if you choose to. Since then I've had, to date, 4 CT scans and various other tests. Not nearly as many as other folk have, but still, you start to get a bit sick and tired of going to yet another test or appointment. I have anyway! Can I pleeeeease just go back to before all this!

One CT scan showed I'd had a DVT in my femoral and iliac veins. If you don't know where these are you can go here. There is a search box up the top and you can find the area you want if you type in the name and hit search. There's a 360° view as well.

So then an ultrasound was ordered. The ultrasound showed what looked like "beading" on my right iliac artery. The report showed that it was consistent with FMD or Fibromuscular Dysplasia. Say what?? Even my consultant, the Prof, shook his head to begin with and I heard him say quietly, "I don't know what . . . . ah . . . . ok!" Then he turned to me and after asking a few questions said he was referring me to the vascular team.

I went home, tried to remember the name of this obscure ailment and typed in FMD. And google lovingly threw up many articles on . . .  wait for it . . . Foot and Mouth Disease! =))  Well, O.K! I knew it wasn't that so went on a hunt! There was very little info and then I found this wonderful site. If you really want to know about FMD you can read about it here as it explains it far better than I can. I found out it is pretty rare and there are very few folk in NZ. 10 or so, but was I able to make contact with a couple. Earlier this year I joined a couple of support networks online. There was no info relevant to NZ at all, anywhere.

I saw the vascular team and a CT Scan of my renal arteries, abdominal aorta and extremities (i.e.legs) was done on 4 April. Well, that scan was clear! No FMD seen in any of those artery beds. Yipee! Part of me is very, very glad and thanking God that it is clear. But . . . and it is a but. There is another part of me that is less than impressed. On Wednesday I had the follow-up to the scan. With the vascular team. Not the consultant of course. With his registrar. Who, like the first registrar, admitted not knowing very much about FMD. Well, I'm pretty sure I more than likely know more. Not being big-headed here, I've just been doing a heap of reading. In America the leading experts recommend that if FMD is suspected the Carotid and Vetebral arteries are scanned as a baseline. Because you can have FMD in the carotid and/or vertebral arteries without it being present in any other artery beds in the body! The registrar said they were confident I don't have it. I don't have it anywhere in the scan that was done ergo I don't have it in my carotid and/or vertebrals. Believe me I did question that! I don't think the registrar was used to a patient having an opinion of their own  :-O  I told him I have some of the symptoms. Yes, they could be due to other things. However they could also be due to FMD. For now I don't know. They are not "going to go hunting" and I've been discharged from the vascular team. This seems to be pretty standard here from discussions I've had with others. So now I officially don't have FMD! The only way to find out would be to go privately and have a scan done and that isn't financially viable right now. So I shall choose to live as though I don't have it. BUT I will always keep it in mind, especially if I have any symptoms such as severe headache, stroke, TIAs etc.

Another consultant I had to see was a gynaecologist. This was because for years I've been anaemic on and off. All kinds of tests and the conclusion was that it was heavy periods that caused the anaemia. I first saw one in 2009 and their solution was a Mirena. Which I researched . . . and declined. If you are reading this, you have one and it works for you, fantastic. At that stage it wasn't for me. Part of the reason is what I personally believe. For myself I have only used natural family planning, this was a choice Boar and I made together and it has worked well for us as a couple. Fast forward six years till October or November last year and I was again off to see a gynae doctor. Predictably with the same result. Oh, and a test to make sure my endometrium, or lining of the uterus, was all o.k. It was. However  . . . a Mirena was again the best solution, in their opinion, and "we could pop it in now while you're here. It's free!" If inserted later I'd have to pay. Not convinced. Oh and the Prof would think it was the best option. Still not convinced! News flash doctors - I'm not afraid to research and, more importantly, think for myself and make my own decisions about my own body which you may not agree with!

The Prof did think that either a Mirena or hysterectomy were the only options. I had coped pretty well with everything that had been thrown at me till then. But, there in his office, at that I nearly lost it. Tissues were nearly needed! But I held it together and after the appointment I took myself to Titahi Bay and went for a walk on the beach. I wasn't ready to go home - Pa was there and I needed some time and space. I found a quiet spot and then the tears did come. For many it might not be a big deal but this issue for me was a biggie. I was angry and upset. After a bit of a cry my usual nature started to gain the upper hand. It wasn't a disaster. It was not what I wanted, but there are many worse things others have to deal with. I decided in the end to go with the Mirena, having had a clot there was a risk with a hysterectomy.

There is a whole procedure to having a Mirena inserted! First they have to decide whether you are eligible - that phone conversation with a nurse was interesting! She more or less queried why I wanted a Mirena. I stated I did not want one but had been told I had to have one. Oh. There were criteria for the funded ones. Reason? - heavy periods. Oh, well, it's not just having heavy periods . . . you need a low haemaglobin. Is 75 low enough? I queried. Oh! You have been through the mill haven't you! Yes.

Anyway it turns out that you need to see the doctor, then it needs to be applied for. Ok - appointment made, doctor fills in the form online. Then you need another appointment for a smear, to check you have no infection. The first appointment was before Christmas. The smear was early this year. It was that particular nurse who informed me I would be eligible to have the insertion done at the Family Planning Clinic! For a lot less than the medical centre would charge. Thank you, nurse, for informing me of this  . . . and why did the hospital not tell me it was an option? So I rang Family Planning and the first appointment I could get was February. One was also made for the insertion later in March. This was a good thing because the results from the smear showed I had a common infection called bacterial vaginosis which needed a course of antibiotics. I did go to the first appointment at Family Planning but I ended up cancelling the second. Mainly because I had another infection, not bacterial but fungal. Not the common thrush we ladies can get. But golly-gee-whiskers did it irritate me! A different one. So no way was I getting anything inserted with an infection "down there"!

It's as though my entire body has gone a bit haywire since the PE! And I just have to say . . . anti-coagulants such as Rivaroxaban, Warfarin, and to some extent I think Asprin, and periods are not a good mix! I have mentioned this to radiographers, blood clinic ladies etc and they nearly all say, "Oh! I hadn't thought of that!" Seriously, it was one of the first questions I asked the doctors when I was still in hospital. Oh, we don't think it will make much difference. WRONG! Many women, I have found, say it makes a lot of difference. I sure found it did!

I did some more reading and research, then I made a decision. When I saw the Prof in March I had been on Rivaroxaban 2 months then Warfarin for 5 months. A total of 7 months. So a decision was made jointly by Prof and I, after he had listened to my reasons. 1) Go on to Aspirin and Atorvastatin as preventatives against more clots. This won't mean I won't get them, but will lessen the risk. 2) Stay on iron pills to stabalise my haemaglobin. 3) Not get a Mirena. I felt that my body needed time to adjust after the PE and when I came off the Warfarin. Also if I was starting two other new drugs how would I know what I was reacting to if the Mirena was added to the mix? Plus the fact that when a Mirena is inserted you can have bleeding for a few months - which seemed counter-productive to me when my haemaglobin needed to be stablised! 4) If my periods didn't settle down in the next 3 - 6 months we look at the situation again, possibly looking at a hysterectomy.

So that is what happened. However . . . the same CT Scan that cleared me of possible FMD also showed some thickening in the wall of my uterus. So an ultrasound of my uterus was ordered. It was done recently and showed I more than likely have adenomyosis. I say "more than likely" since I've already had one "more than likely" or  "consistent with" with the FMD and further investigation showed I don't appear to have it. So heigh-go, heigh-ho, it's back to gynae I go!

* * * * * * * * *
Well! Can you believe that was written nearly two weeks ago? Once again life intervened and despite good intentions that I was going to finish it off I didn't. When that happens, especially after a time lapse, I have no idea what I was going to say next. So I'll proof read it and publish it. 

And the title? Well, you get thrown some curve balls in life and I believe you can choose how you deal with them. Most folk go through a stage of shock/numbness when major things happen. When that wears off the work sets in. I mean the work of dealing with whatever the curve ball is. This is when we can choose our attitude, how we are going to live beyond it and many other things. It will be different for each situation and person. 

For myself I choose to live as well as I can. I am so very blessed! I have a strong, caring husband, 6 beautiful children and their partners, 5 precious grand-children. We have a roof over our head, food on the table every day, a warm fire in this cold weather and many more comforts! Our health is o.k. I can see, and hear, and speak. 

There are so many others in this country who have so much less. So every day I thank God for what I do have.  

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