Chronic Illness See-Saw…. 1 Step Forward….2 Steps Back

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Chronic Illness can be like a see saw. Just like the one in the photo above. Sometimes the thing that makes the difference between whether there is progression or regression can seem so small but yet so big at the same time.

Years ago in Barbados there was a Soca song that was written to describe the government………..I think it was…………most songs written are about some social issue.

Anyway, today as I was thinking about the effects of being ill, besides the image of the see-saw with the slightest thing tipping the balance, that song came back to my mind. Its called “Breakdown” by Serenader.

The chorus of the song goes:

One step forward

And two steps backward

And tremble

Hold ya belly and tremble

 

How apt.

I feel like I take one step forward and then two back. Just when I think I am improving something happens that pushes me back again. This thing that occurs is not always physical, it could be a simple as a comment made by someone.

I misplaced an item, truth be told I have no idea where it is. It is not something that I would not place in a secure location……this just adds to the frustration.

I asked the one other person who could possibly have it to check through her things just in case. Her response was quick and sharp………….you are supposed to have that not me! I just left off what came before that statement.

My immediate thought was ” I really have to explain to this woman again………..sigh!”

When you don’t experience brain fog it can be the most difficult thing to understand. When you do, it can be the most difficult thing to explain.

I searched and searched every possible place that it can be in my home and I have not found it. All the while I am thinking to myself ” gosh girl, you really losing it”. The “it” there being my mind and not the item.

I really felt horrible………….I really feel horrible but there is nothing I can do about it now.

You may ask if something so slight can have such a devastating impact? The answer is definitely yes.

Its such a delicate dance from day to day to be in good spirits even amidst the physical challenges. Sometimes staying in that space is exhausting all by itself. Little things can seem like failures or statements of inadequacy and inability. Little things can make you question whether you should even try to do or to be sometimes. The slightest thing can lead to regression.

So when you take one step forward, then two back…………what’s left to do? Hold ya belly and tremble? Or just breakdown?

I don’t have the answer. It can be any or all. However, for me…I just keep on stepping and trying to maintain this delicate balance.

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30 Day Chronic Illness Challenge- Day 22

0b25d42f697a41f0ad8f44f6e312d328How do you think you have been treated by the medical system? Explain.

My first thought when looking at this question was “oh boy…”

For years I went from doctor to doctor who basically told me that my pain was all in my head. I was attention seeking. I was making it all up. There was no medical basis for what I was saying. The tests came back negative.

That was the language as opposed to “I don’t know what is wrong” or “I have done all that I can for you”.

This language , let me qualify, was not in reference to Endometriosis. I was diagnosed with that at 16. My symptoms and then the diagnostic laparoscopy proved that. The “you really are a crazy woman” came after.

I was going along with the Endometriosis diagnosis and doing all the treatments, hormonal and surgical to no avail. I had the miracle babies, I had the hysterectomy and I was still in pain. The OBGYN basically said after that there was no reason for my pain.

It was quite frustrating.

However, the one medical professional who believed me from the get go is my GP. He never made me think that I was crazy or it was all in my head. He took me at my word and started to search with me. He selected conferences specific to my symptoms to attend and contacted colleagues around the world to get feedback and information. For that I am grateful.

It was through his work that the diagnosis of Pelvic Congestion Syndrome came. Then the referral and embolizations. The first of which gave me 6 blissful, pain free months and the second which proved that I was developing secondary re fluxes- veins that became incompetent after those which were leaky had been fixed.  This is a major part of my present issues – this tendency to develop new leaks. This is the reason embolization has not been effective in my case on a long term basis.

I still get the disbelief even now though. This is mainly from OBGYNs who easily acknowledge the Endometriosis but discount the Pelvic Congestion Syndrome as non-existent or an “exclusion diagnosis”; all this although I have the proof of the 6 months and photos of the leaking veins.

So the medical system has not been the most kind to me. In many ways the doctors still act as though I am lying or it cannot be as bad as I report. After all I smile and go about my business. I say I am in pain and am still able to get through examinations without breaking down. Its a struggle.

I think that some doctors are good at what they do but they should strive to be great. They look at me and see a disease. They need to see a person. Maybe then they will start to treat me and all the others like me differently.

physician

 

 

 

 

 

 

The “Calm” before the storm….

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I wrote a few days back about being in a downward spiral and feeling helpless to stop it. Right now I feel as though the spiral has slowed but intensified- just like a hurricane that slows down is building strength and will be more dangerous when it reaches land.

Since my visit last week with the surgeon and the next day appointment with my doctor, well actually since the meltdown and IV meds the week before that things have not really improved.

True I am not in pain at level 10 anymore but it is not going below 6-7 either. Most times I hit 10 and have to go in for emergency relief, things get better for a bit. The pain levels drop way down to 5 or below. I feel as though I could have a few “good” weeks without having to go into the office or emergency for help. As if the pain can be managed with my meds at home alone.

This hasn’t happened in this instance.

Over the past 7 days I have been in pain at a constant 6.5-7. In the midst of this has been hours of pain ranging 8-9 where I just had to stop doing everything and stay in bed. I have been home from work and have had the opportunity to rest. I have not been trying to do much of anything at home.

On Friday, I decided to put some clothes in the washer, mainly my stuff because hubby and children do most the laundry anyway. I got the basket down the stairs- no problem- and put the clothes in and set the machine going. There was food from the day before so I didn’t have to cook and I just left the house as it was (no cleaning) and went to rest while watching a bit of television as the washer ran.

When it stopped, I went back down the stairs to hang the clothing on the lines (most people in Barbados don’t have dryers and if they do we usually hang clothing on lines to dry because its generally hot and sunny here).

I don’t know if it was the reaching into the washer to get the clothing or the raising my hands up to hang them but I was instantly dealing with some sharp pain. Being who I am I gritted my teeth and decided I would get the clothing hung regardless of the pain.

This is just one example of the week  but all week long I had situations like that. I have increasing pain in my back and pelvis with full bladder or bowels and after emptying either. Walking is an exercise in pain right now…………actually any movement is. I have difficulty sleeping because of the pain.36f0cbd188f1591a57846d6368ebcf67The past few nights I’ve just rested my head on hubby so he could hold me and offer some comfort as I lay awake-obviously this means he is not sleeping either.

Its almost as though every pain has been magnified since I’ve been home. The pain is not reaching 10 but dancing by and then jumping back. It’s scary.

Emotionally, I am on edge because I can feel that the worse is yet to come. I am not trying to be pessimistic, rather realistic. When you have lived with illness for so long you get to know certain things. I can feel the decline in my body. I feel weak both physically and emotionally.

Its as if all of me knows that something I would rather not deal with is around the corner. Yet there is nothing more I can do to prepare.

Just like a hurricane warning………its given, we secure the house as best we can; raise the refrigerator and freezer temperatures to the highest to preserve the food longer in case the power goes out; we pack go bags in case we need to leave the house for a shelter; make sure everybody has water, canned foods, non-perishable stuff, medications; then we wait. After we have done all we can, we wait, praying it will pass us but prepared for the worst.

I am waiting now. Trying to go about my day, doing what I can, when I can, resting when I must. Dealing with the pain as it comes; taking pain meds as prescribed and just waiting.

I feel as if I think about it or talk about it too much I will break. If I break there will be no putting me back together soon because I am spent. Yet I continue….I just do what I can when I can……………..and I wait.

30 Day Chronic Illness Challenge- Day 11

accepting-life

 

 

Why do you believe you have this illness? Bad luck? A higher power? Or something else?

I don’t think it’s any of those things. Illness is a part of life here on earth. That’s it as far as I am concerned.

I don’t think it’s a test or something to teach me anything. I do believe though there are lessons that I can learn from the journey and growth that can take place. However, I was not given the illness to teach me a lesson. It’s just a part of life.

We all have a struggle, some illness, some other stuff. Its life; how we handle what comes our way is more important than the thing or event itself as far as I am concerned.

I think though that the illnesses are as bad as they are in my case because of medical decisions I made earlier in life in attempts to deal with the pain. For instance, having the hysterectomy, in retrospect created some challenges. The fact that all the veins etc. that supplied the uterus are tied off now and there is no outlet for the blood rushing in when the hormone levels drop is problematic. This increases the congestion and the avenues in which it can occur.

I think if I had doctors back then who took an integrated approach, maybe things would be better now. I have no malice towards them, I’ve just grown, I’m older and wiser.

So, no there’s no special reason I am ill in my mind beyond the fact that this is a sin cursed earth and illness is a part of it.

 

30 Day Chronic Illness Challenge -Day 5

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How does being Chronically Ill make you feel?

Its such a challenge to quantify all my feelings surrounding being ill. I guess growing up I never thought about having any illness for an extended period of time. You got ill, went to the doctor, took medicine and got better…………that was it.

In hindsight, this obviously wasn’t true but again I was socialized not to know what was going on around me in terms of illness. People in the family died and we never knew what the illness was they died from…………….even to this day some things are still kept secret.

So how do I feel? My first thought is Angry. Then because I know that anger really is a secondary emotion I have to dig a little deeper.

I am sad. When I think about all that my life could be and all that I have had to put aside or give up or not experience because of illness it makes me sad indeed.

I am frustrated. I feel sometimes like I am banging my head against a wall and opening doors that lead to nowhere or that promise something and then I get nothing.

I am disillusioned. I feel sometimes like there is no hope. I am constantly fighting this battle and there is no end in sight. Yet I keep fighting.

I feel like I have been short changed. Like there is more to life but I have somehow been given a bad deal.

I am scared. I fear that this is all I will know………..even bigger than my fears about myself are my fears about my daughter following this same path and having this drama to deal with throughout her life.

I feel alone. Sometimes, I feel like it is just me. Obviously, I know it isn’t; but I feel like it.

I know though that if I lived my life based on how I feel I would never achieve anything or get anywhere. So although I feel all the above on occasion, these feelings do not control my life.

So how do I feel? I feel all the above and more to a depth that I cannot truly explain. A depth that must be felt. A depth that you must look into my eyes to understand; where you must sit with me and cry to understand; where you must laugh with me to understand; where you must dance with me to understand; where you must walk in my shoes to understand.

I feel everybody has a struggle and we are all just trying to live and love. I feel happy, sad, contented, upset, miserable, peaceful, frustrated, elated…………………………………………………..I feel more than my words can say.

Downward Spiral

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I googled downward spiral and lots of doom and gloom images came up. This one is the most apt to my situation. I feel like I am spiraling down…..

As you know the last few weeks…..probably 8 or so……have been one pain episode after another, after another. Usually, I can say I have about 8-12 weeks without needing to rush in to the doctor or have IV meds although during that time I am in pain and may stay in from work etc.

In the past four weeks since I have been back to work I have been at home a total of 4 days, including today, because the pain was more than I can handle at work. I have been on constant pain meds……….codiene and tramadol, stopped the codiene but still using tramadol as prescribed right now. I usually use the meds as needed as opposed to everyday as prescribed. I have also had some less than optimal days at work, where although I was there and working it was not nearly what I am accustomed to doing. My office staff has been holding my slack, taking my classes, doing most the running around and driving to visits etc. that I would do; just to help me get through the days.

So, things don’t seem to be really improving.

I am heavily impacted by the estrogen levels in my body and both illnesses are worse when the levels are high. I have been in “full hormonal drama” as I call it for the past two weeks. I can feel it all over and the pain confirms it.

I am waiting on and petitioning the doctors to agree to remove my ovaries. I need to shut this down. They are still at “38 = too young”. Yes removal of ovaries so far from menopause has its challenges. I know there is greater risk for heart disease and Osteoporosis is a consideration. I also am aware, that when I have the procedure done I will wake up in surgical menopause which is said to be quite harsh. I also know other women have done it and managed, they lived long, happy lives. They found a way.

However, at what point is quality of life the consideration? At what point do they say that I am missing too much work and my productivity is too low because of the illnesses? At what point do they see that I am worn thin and will soon break? At what point do they acknowledge that I’ve done the analgesics and outside those that I am allergic to I have few options left? At what point do they acknowledge that I’ve done the herbal medicine and acupuncture to no avail. At what point do they acknowledge that yes my gluten free diet helps and works for me but does not make the level of impact that I need it to? At what point do they acknowledge that I have done the Provera, Lupron, Mirena, Hysterectomy, Embolization x2 and still returned to this point after each one? At what point do they acknowledge that I would not elect to have this operation if I had not done all that was suggested and more…………to no avail?

It is only March and I have already used all my sick days for the entire year from work.  I can have more time off but the probability of my pay being docked is very high. That is not something I can afford. That would lead to more stress and illness because creditors will be calling when payments aren’t forthcoming. Its a catch 22. I am trying at work but I know I will have to be off again soon.

A few months before I had the hysterectomy, I became ill to the point where I was off work for weeks; even before the decision was made to go ahead with the surgery. My body just could not do all that I needed it to.

I feel that same way now.

I am trying and working to the best of my ability but everyday it is looking like it is not enough. My brain is functioning well but my body is broken. I don’t prefer staying home but I am exhausted. Most days I get in from work and just go to bed. I have no choice. I need to rest before I can attempt to do anything else. Today, after I saw the children through the door to school, I slept for 5 hours straight after  sleeping the entire night. I’m tired.

I feel like things are getting worse each day instead of improving…….slowly spiraling to……..surgery I hope.

Thankfully, I am not depressed, more-so frustrated. I am not seeing this situation ending in death or hospitalization (outside of surgery). I just believe that the time for delay and questioning has passed. Everything is saying to me that the decision has been made……just have to get the doctors to see it.

My next appointment is March 5, a few days away. I am hopeful that there will be good news and that sometime soon I will be able to have the surgery and have both cyst filled ovaries and adhesions dealt with.

So can this downward spiral be a positive thing? Can it have light instead of darkness at the end? Guess it depends on how you look at it. Yes things are getting worse but it is that fact that may lead doctors to acknowledge the need for surgical intervention.

I will look forward to the light. Regardless of what is said on March 5……there’s no room for darkness………….I will continue to be positive because I acknowledge that the majority of this battle will be won in my mind.

 

30 Day Chronic Illness Challenge Day 1

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Thanks to my sister over at Nurse Notions and her inspiration over the past month I am participating in this 30 day challenge.

Day 1: Introduce Yourself, What Illnesses do you have and how long have you had them?

My name is Lyn, well actually that is my middle name but the one that is used for my online presence, anywhere on the net, even lectures and presentations I have done its Lyn. I am 38 years old, mother of two miracles aged 11 and 8. I am a Counselling Psychologist living in Barbados.

I have mitral valve prolapse, asthma, endometriosis and pelvic congestion syndrome. For the purpose of this activity though I will focus only on the two that impact my life at this stage the most: endometriosis and pelvic congestion syndrome.

I have had Endometriosis for 22 years. Truthfully, I for a long time did not count Endo as an illness I had. I believed it had been dealt with or had been misdiagnosed. Only in the last few months have I had symptoms and ultrasound evidence that speaks to it. However, I was diagnosed when I was 16 year old….that will be discussed as the challenge continues.

Endometriosis is where tissue like that which lines the uterus is found outside of the uterus and at times outside of the pelvic cavity. Just as the lining of the uterus responds to hormonal changes as the menstrual cycle progresses, this tissue responds as well. When menstruation occurs this tissue also bleeds but there is not “escape” for the blood which falls on other organs and creates scar tissue, causes adhesions and as one would imagine intense pain. There is presently no cure and intervention is mainly in the form of analgesics/ pain relief medication. There are several hormonal methods that are used to control the hormone levels within the body and theoretically shrink growths etc. but for me none of it has worked.

I have had Pelvic Congestion Syndrome for probably in my mind about 7 years; this is the first time I believe I would’ve experienced any of the symptoms that are specific to this illness. Pelvic Congestion Syndrome (PCS) is part of a larger category of illnesses known as Chronic Venous Insufficiency. The veins in my pelvis have faulty valves. They do not close as the should and allow blood to flow backward and pool within the vein. Therefore, as you would see persons with huge varicose veins on the legs etc……I have those on the inside of my pelvis. They cause intense pain, heaviness and a dragging ,achy feeling. As a result of this I also have one hemorrhoid and intense lower back pain.

Both spell pain in my dictionary.