Living beyond existing

[livlovlrn]

Here I go again

Well, here I am starting up again.  This blog was started however long ago to help me process and track my health issues.  I stopped for quite some time as I felt so much better, but after a while I realized better wasn’t truly well.  After struggling for a while with what to do about that, eventually I realized I needed to start with yet another new Dr but I think it is good.  I’ve been thinking I needed to stay with the same one, build some history instead of forever changing but the thing is that in recent history I have gotten the help I needed from the Dr’s I have seen and when they helped me with what they could it really was time to find someone else to help with another aspect of what has been bothering me.

This new Dr has some specialization in hormone balance.  She is the first one to order tests that examine my full hormone levels.  I sure wish I had gone down this road sooner, but I know God’s timing is perfect so this is the right time for this.  Would have been nice not to have gone all those years with little to no energy, but what is past is past, it is time to look forward to the future. Turns out this was a good move because results show all kinds of imbalances of insulin, testosterone and cortisol.  Hoping whatever plans the Dr have will truly work and I’ll be able to live an actual life instead of this menial existence

[livlovlrn]

What lengths would you go to?

I know it’s been a while.  I feel like this has been an outlet for me, a voice to my journey that has been long and stressful and now I am coming to the end of that journey because I am getting better and better.  I still intend to blog but I have to decide what tone to give that blog; and whether to continue here on Tumblr or to find another outlet for it.  We’ll see.  I hope I’ve helped or encouraged someone somewhere with my sharing of my life; I hope I’ve helped make someone search a little more for help or feel a little less alone in their struggles.

Today I want to ask you a question which I already have there in the title. That is: What lengths would you go to to gain, regain, maintain your health? Would you give up your favorite food? a pet? you entire lifestyle? What extent would to stop and say “I’m willing to stay sick to stick with what I’ve got”?  I can honestly say I can’t say what I’d do in all those situations but I have gone to great lengths to regain a great deal of health.  I’ve given up many foods, spent a lot of money (in my world anyway) on health care providers, and, most recently, given up taking showers, to regain and then maintain my health.  It isn’t easy to give these things up but there is this thing inside of me that won’t let myself accept the less than a life I was living when in the depth of the illness.  When anything begins to cause me to slide back I do what I can to stop the regression.

This is why I stopped taking showers (hopefully as temporarily as possible).  I had been noticing in the past month that my hair had been seeming different, a lot dryer and I started getting split ends, when I hadn’t had any previously (in all honestly I have had split ends before, just not since I started eating super healthy).  Then the last time I took a shower my face stung all day long; there must be a big ol’ bunch of chlorine in the water to make it hurt that bad for that long.  With my system being so sensitive I realized it wouldn’t be a good idea to subject it to that kind of chemical bombardment all the time so decided I would forgo showers and do basin washing instead.  This is not an easy task.  I use filtered water from our on the counter system, but that in itself takes some work so I also buy jugs of purified water from the store.  The leaning over kills my back, especially when washing my hair but I am willing to put up with it because I know I don’t want to pay the consequences of allowing those chemicals into a system that can’t process them well.  I have people roll their eyes at my seemingly crazy ideas, but thankfully that doesn’t bother me.  I know I am doing what is best for this body of mine that tends toward the fragile side.  I also know that working on keeping it healthy makes me a better person which allows me to focus on things other than just surviving.

So let’s get back to the question, really I have even deeper questions for you. Are you satisfied with your health the way it is? Do you feel you’ve found answers to your questions why rather than getting a “band-aid” on your symptoms? How far ARE you willing to go to truly find the cause and find healing rather than temporary fixes?  Ask yourself these questions, go from there

As always thanks for listening Until I check in again Shalom

[livlovlrn]

It’s been a while

I know it’s been a while since I’ve posted here; I always intended to keep this updated no matter what but as I’m sure you know, life gets in the way.  Some of the time off I’ve been busy, some of it I’ve been sick, and putting them together has made the hiatus longer than I hoped it would be.

On the bright side I’m so much better than when I started this blog! So much better :)  If you read back you’ll see that my beginnings with the doctor I’m seeing were rough.  They are a bit unorganized and there have been some times when I had to be very adamant, but somehow inherently I knew this place was my place of healing.  In some ways it has been the same story where I had to insist (when it came to getting an ultrasound of my thyroid) on things; but from the beginning I told the doctor I needed him to listen and believe me and, though he may have been hesitant, he has followed through for me when I argued with him.  In the past this hasn’t been the case which is why I’ve gone to several different doctors over the years. Plus this office has so many diagnostic and treatment options that I just knew we were going to be able to find some answers.

Since starting at this place a little over a year ago (I can’t believe it’s been that long) I’ve regained strength, energy, and brain function. Most days I can get up and get through the day without wondering how I’m going to make it til the end of the day.  I’m so very thankful for that. I’ve gone from having a rare good day to having a bad day now and then. I’ll take it for now but know that there is more healing and better health to be had.

I wanted to post before and after pics but I’m sick right now so don’t think it would be the best comparison; maybe when I get better I’ll be able to post something that’ll show tangible evidence I’m doing better; right now most of it is internal :)

If there’s anything I hope for by writing these posts it’s for you to remember to never stop looking for answers until something makes sense; never stop looking for healing until you find something that works.  Never accept “that’s just the way it is” as an answer; never stay with a doctor who isn’t willing to do for you whatever he/she can to get you well. If my journey can help you on yours then it will have been worth it to go through it all.

As always thanks for listening, until I check in again Shalom

[livlovlrn]

Some good progress

Started seeing the doctor again after a little over a month break; what with moving and Christmas I just couldn’t add driving over an hour away to appointments, it was too much.  So I took some time off.  What I realized is that I am doing so much better!  Since I started this treatment I haven’t had a single day when I couldn’t do anything at all. I’ve had a few when I had to talk myself into doing something, but I was able to do so.  I’ve pushed myself to physical limits I didn’t have before and, while tired for a few days after, not so tired I couldn’t push myself some more (as was necessary because of moving).  As I mentioned to my doctor, I have a few hours in the morning when I can do almost anything I want! This is exciting news!!  I’m usually out of energy by lunch, but I’ll take whatever I can get.  I’m no longer spending days and days lying on the couch wishing I could do any little thing.  I love the progress I am making, I am thankful for the energy increase and look forward to further progress as we continue treatments.

I also discussed with the doctor that I could feel when I wash my neck that the nodules are getting smaller.  He said he agreed, that he could tell they were smaller and softer (he does some massage type therapy as one part of the treatment).  This tangible acknowledgement added to the increased energy gives me hope that there is light at the end of the tunnel.  I could just be thankful for how far I’ve come and leave it at that but why settle for half way?  I didn’t accept that my life had to be a drudgery as it was before I started treatment, why settle for only part way better?  I will know when to accept that I am as well and I can get and this isn’t it. I AM thankful for the progress I’ve made, but I know that there is more to be made and I’ll push until I get there....and I’m so very much looking forward to it!!

At this last visit (my first one back after the break) the attendant was so very kind to offer to take a picture for me.  I’ve been wanting to get this record of the treatment to show you because I don’t think I did a very good job describing it.  This is part 3 of the treatment, after the Dr does his part, and then I lay there with the discs on my neck for the galvanic treatment...this third part is called “high volt”, the red part of the wand is where the electricity is running through the tube and giving the treatment.  I use lotion to help with “glide” and rub the wand along my thyroid, 5 minutes each side.

I’m usually pretty wiped out after treatment and still don’t sleep well the night after I go so there is still progress to be made (the more I do the worse I sleep) but again I am so very thankful to have found this place and this treatment system and to finally, after such a long time, be on the mend!!!

As always, thanks for listening Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Well, Hello!

It’s been a few weeks since I’ve checked in, the reason being that we somehow decided to move during the Christmas season, so all I really had time for was moving and trying to do something for Christmas.  I only actually got gifts for immediate family, and that was mostly one big shopping spree rather than the find things here and there over several months that I usually do....moving is a very big deal!!!  We moved from the first house we ever owned so selling then buying a house was a new experience for us.

First you have to do a bunch of improvements on your house (if you haven’t done them over the years like smart people do); that is a drain on time, energy and money.  You also have to empty your house out as much as possible to make it look bigger and more spacious.  Thankfully we have relatives who own a mini-storage so that has been a huge blessing.  Once you’ve sold your house you only have a certain amount of time to stay there so if you don’t already have a new house picked out (which we didn’t) you feel rushed to find a new place to stay.  Thankfully we were able to “rent back” our place for a short time period, but we didn’t want to do it for too long because it was such an odd sensation not owning the house we’d lived in/owned for 14 years.

Next (once you’ve purchased your new house, or rented it or whatever you’re going to do, I won’t get into all that goes into that) you have to pack all your junk into boxes and other things to get it all out of the house, hopefully to your new dwelling.  This takes a lot of time and effort as well.  We ended up renting a U-Haul trailer 2 weekends.  Thankfully a couple people were willing to help us or I don’t know how we would have gotten everything moved in time.  We moved big stuff and most of our necessities the first weekend and started living in the new place right away.  The week between the 2 weekends I went to the “old” house every day and packed more.

The next step is to clean every nook and cranny of the old house (I skipped the cleaning of the new house before you move in because ours was empty before we moved in so it just needed some touch ups which my husband did).  This is a bittersweet chore because while you are cleaning it out you are, in essence, saying goodbye to this house; remembering the time when that wall got run into or marked on or the carpet was stained because of....It is hard not to let the tears get in the way of getting the job done.

Once you are finally in the new house (mostly anyway, with storage units still full of “stuff”) you might think you could relax, but when it is Christmas time there is no time for that!  We managed to get through it all, though and I’ve actually had a little bit of time to clean and organize the rooms we’ll be using the most.. I even did a little Christmas decorating!

That is the extent of my decorating LOL; I found it in the box that had the Christmas stockings in it and figured it was an easy thing to put up, so I did. 

The victory here is that I was able to do more than I expected and, while it did prove that I’m still not completely well (the more I did the worse I slept, AND I GAINED weight even though I got quite a number of workouts over the weeks of packing, moving and cleaning) it did NOT take as long to recover as I thought it might (less than a week). 

Well, guess I’m all caught up now, I’ve not had any treatments this month because moving and Christmas was enough for me to think about without adding that in.  I start back again in January and will be sure to update my progress.

As always, thanks for listening Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Coming out of the darkness

I feel like I am starting to live a real life now.  I’ve always been one to live in the present; not really focusing a lot on the future or the past, but during this time of illness I’ve only been able to focus on the very immediate present, like, how am I going to make it through this day, this hour, this minute. I don’t have to do that anymore, the main focus of my life is not survival anymore; it’s a very good feeling.

One thing I’ve been thinking about recently is that you can be a positive person but not a happy person.  This never really occurred to me because the two seem to go hand in hand but I’ve discovered they don’t.  I AM a positive person, always hopeful, looking on the bright side, seeing the positive in many situations; but I am not a happy person. Not because of any one thing, just having spent so long with such a heavy burden I lost my joy.  I’m working on getting it back, though.  The burden is lifting, I can function somewhat normally again, I can see a light at the end of this very long very dark tunnel that has held me captive, entangled, immobile for too much of my life. I remember not feeling the weight of the burden of the illness at the beginning, but time wears you down. I’ve been envious of stories of people who keep their joy in the midst of times of burdens, I was unable to do that; it’s something I’ll have to come to terms with and move on from.  Life is an ever evolving lesson to learn.

So from here on out I will be more joyful because that is what I want from life; Love God, my family, my friends, Learn from my experiences, mistakes, and others, and Live in peace, laughter and happiness.

As always thanks for listening, until I check in again Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Check your neck

Well, I don’t really have any updates for today, so I wanted to talk a little about this thyroid thing.  What I’ve found out is that it is very common, and the older you are the more common it is.  If you are 30, you have a 30% chance of having thyroid issues, if you are 40 you have a 40% chance of having issues and on up like that.  Women are more likely than men to have issues

Yesterday at the end of the day a few co-workers were chatting while we waited for the final client to finish up.  One mentioned that her hair was thinning and I automatically looked at her neck because I know that thinning hair can be a symptom of thyroid issues.  I’m no doctor, but I could see she had swelling around the thyroid area; which is called a goiter.  Of the 4 of us standing there 3 (including me) had that swelling. 

So I encourage you to check you neck, I’ve posted some pictures here to give you a little bit of an idea of what they look like; borrowed these from the internet.

The swelling at the bottom of the neck is indeed swelling, not fat.  Each of these women have a goiter.  Sometimes it is very obvious (in thinner women); looking like a ring of fat around the bottom of their neck (again it isn’t actually fat, it is swelling).  So I encourage you to check your neck; or ask your Dr to do so.  Remember my blood work came back normal for almost 10 years.  I had one doctor tell me he felt a node, and another point out I had a goiter (I can’t actually tell I have one). It wasn’t until I got an ultrasound that they found very large nodes/cysts on my thyroid.  The moral being that if you don’t feel your normal self, don’t let the doctor stop at blood tests that may come back normal; continue to search for answers until you find one that truly makes sense for you.

That’s all I have to say today; hope you are standing up for yourself to gain or regain your health! And don’t forget to check you neck!!

Thanks for listening, until I check in again Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Improvement!!!

I am definitely noticing a positive difference.  I can honestly, truly, thankfully say I am feeling better :) This is huge for me!!!

I had my second treatment this week, it was pretty much the same as previously but we added 5 minutes to the time I had the pads on my neck....the ones that make it turn red; last week was 15 minutes, the goal is 30.  The Dr is using caution because my body is so sensitive; I am thankful he is taking that into consideration.

We are in the process of getting our house ready to sell, so any time I have available I work on packing, storing, cleaning tidying etc.; all the many things involved in making a house a little more enticing to potential buyers.  Doing these things takes a lot of energy.  I still have to be careful how much I do but have noticed that I can do more without repercussions.  And when I do too much I’m not quite as overly tired as I have been previously, my recovery time has decreased as well.  This is one of the biggest problems I’ve had over the years. I’m also sleeping better...well when the kitty babies don’t keep me up half the night.  All things that I’ve been hoping for for a very long time seem to be finally coming true.  The last gauge of wellness for me is my weight.  I’ve gained a fair amount and not been able to lose most of it no matter what I do (I honestly LOVE to work out).  So as I’m able to do more and more, sleep more and more and finally, lose weight, I’ll be able to say I am better or maybe one day say that I am well!!!

One other small thing is that when I woke up this morning one of my first thoughts was “I can swallow easier”.  This has to be more intuitive than anything because I never really felt like I had difficulty swallowing. I’m sure these nodes grew gradually so I wouldn’t notice any changes, but if you think about having these huge (for the area they’re in) nodes they have to have been blocking or pushing us against other things and it seems like what we are doing is working, that they are shrinking.  I keep swallowing to see if I still feel that way I and I really do! I feel like I have all kinds of room to swallow LOL! Who would have thought that was a thing. It isn’t something I expected, it isn’t like I thought, “once those nodes shrink I’ll be able to swallow easier”, it never even entered my mind so this makes me feel like they really are getting smaller with the treatments.  I am very thankful for that. 

My hope is eventually to be posting on this page my adventures, and also get back to comparison pictures to log my progress.  Then this blog will have an entirely different focus; what that is I’m not sure quite yet!

As always thanks for listening, until I check in again Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

The loneliness of chronic illness

I remember the first time I realized I was really sick; funny how it took someone else to point it out to me.  I had been borrowing movies from a co-worker.  She would bring these boxes of VHS movies to work that she had gotten a variety of places and I would choose some and bring them all back when I had finished watching them.  One time she commented on how much quicker I had returned them and it got me to thinking about how all I wanted to do when I got home was lay in bed and do nothing.  I don’t think that was even at the worse of it, because I remember a point when it felt like it would take too much energy to flip the calendar pages to the next month.

When you don’t have the energy to do anything other than what absolutely has to be done you lose friends. People don’t understand that your becoming more and more of a hermit is because of lack of energy; they take it personally when you say you can’t go somewhere or do something.  They have their lives as well, and go on with those lives without you because they don’t have the time/energy to cater to your illness; even if they don’t understand that is what is happening.  Really if you don’t understand it how can they? I know for me, it took a very long time to understand what was going on; because this particular illness also messed with my mind and my memory. It isn’t only friends you lose; but family members distance themselves as well, again because they don’t understand the illness, how it works, how if affects you.  I literally almost lost my husband over it because he figured I wasn’t interested in him any more. (Thankfully we were able to work it out and are now closer than ever.)

Another part of the loneliness is feeling like no one in the world can understand you. You explain over and over how you feel but you “look normal” so it is written off as something minor and inconsequential. If you haven’t been there you just don’t understand what it is like.  If you do get yourself to do something because you feel it is important enough not to care about the consequences later, those around you use it as proof against you that you really are fine.  I met a woman once (ONCE, and this is recently) who seemed to truly understand what I was talking about; I cried as I was talking to her because it was such a relief to talk to someone who seemed to really know what I meant when I try to explain what this hell has been for me.

As I come back into life I feel like I have to start way back at the beginning again which is hard to do as an adult.  Friendships take time and you can’t go back because people expect you to be the same person they knew before and I don’t think I’m the same at all.  In the depth of the illness I didn’t really notice because it was all I could do to just get through the day, so I come out on the other side, thankful for being able to think straight again and still feel such loss; loss of a decade of life, of friendships, of family of so many things.

If you see yourself here, either in my story or someone else’s, I don’t blame you, I am just explaining my point of view. I’ve forgiven anyone who “dropped” me because I do understand. But I encourage those of you who recognize someone in their life in this story to re-connect with them or not let the connection go.  Help them, take the time and energy to be the friend they need; even if that means just sitting with them for 10 minutes (because that’s all the energy they’ll have for you) or go clean their house, walk their dogs, anything to lift the burden they are under due to an illness they can’t help having.

I hope it is understood I am not complaining, I’m explaining.  The more I can help people understand the better for those like me who need help, need healing.

As always thanks for listening, until I check in again

Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Thyroid treatment

Well I had my first treatment session for my thyroid.  Just a reminder I have been disillusioned by “western” medicine for a long time so always am searching for more natural ways to treat whatever is going on with me.  The doctor(s) I am seeing label themselves as naturopaths and that is the field I have stuck with for about a decade now.

SO! My session was actually 3 treatments together.  First the doctor did what he called “manual manipulation”. Normally I think of that as chiropractic procedures of popping joints back into place. For this really he just pushed on and massaged the areas around my neck and throat.  Most of it was tolerable, the only part that really hurt (a LOT) was when he massaged deeply around my clavicle (collar bone).  YIKSEES!!!! that hurt.  He also massaged my neck a fair amount, I think he said working with the lymph system getting some adhesions broken up (basically that’s like a muscle knot that won’t let go)

Next they did galvanic treatment on my thyroid.  This is the type of treatment I had done once before and got burned.  The attendant was very kind and helpful making sure I didn’t get burnt this time; especially considering it was on my neck!!!  So for this treatment they put a damp towel on my back; this is the part where they had to make sure it wasn’t wrinkled so it wouldn’t burn me; she was very careful about that.  Then they had 2 largish electrode discs which I believe had iodine on them. They put one on each side of my neck and then put a cloth and velcro collar around those to keep them in place.  This treatment was set for 15 minutes to see how I tolerate it (because my body is so very sensitive) but will be a 30 minute treatment eventually.  They turn on the electrodes and allow me to say how much frequency I could stand; it was pretty low this first time. I have sensitive skin and it felt like I was being poked by needles a little bit...not terribly painful but a little uncomfortable.  If you’ve ever had any kind of electrical treatment you know that whatever discomfort you may feel at first goes away after a few minutes.  the doctor warned me it would make my neck red and it sure did :D Also very swollen, I could feel my thyroid when I swallowed for about an hour afterward.

The third treatment was high frequency electro-therapy. They had this wand like tool they could put different pieces on, for me it was a “T” shaped piece made of polycarbonate or something of the sort. The top part of the “T” was curved a bit. I was given instructions not to touch anything metal or anyone else. They gave me a bell that was not metal and told me if I needed help to not stop the treatment but to ring the bell and they’d turn it off for me. The attendant put some lotion on my neck and turned the machine on for me and I used the tool massaging gently up and down my neck.  It felt a little like I was shocking myself, I could feel it every now and then as if it got off the lotion (which was pretty impossible with the amount she put on LOL) and was “jumping ahead”.  Again it wasn’t really painful just felt like little pokes.

Now we see if it helped at all.  I will have treatments every two weeks for now (again because my body is sensitive and takes a while to adjust to things, otherwise I’d go in once a week minimum) and see how we progress. So much hoping this is the answer I’ve been seeking for so very long.

That’s it for now, thanks for listening. Until I check in again Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Why I can’t say I’m sorry

I know I am a pain in the butt to the doctor(s) I’m seeing.  I’m sure they are used to patients agreeing with the diagnoses and treatment plans they prescribe; and honestly I used to be that kind of patient.   When I first started this chapter of my life, this illness chapter, I listened and followed what I was told to do respectfully and without question. But that was a lifetime ago, a far distant person to the more knowledgeable, informed person I am now.  What I have learned about health and nutrition, about myself, and about the medical profession has changed the way I interact with doctors and diagnoses and treatment plans because what I’ve learned is that they don’t know everything, and they don’t live in this body.  I’ve become very in tune and intuitive about what works and what doesn’t work for me.  I am not saying the doctor doesn’t know more than me, they certainly do, or that I treat them any less respectfully because I believe they still deserve respect, but I know more about what works for me, either by trial and error, or past experience, and I’m willing to stand up for myself to get the best of what they have to offer and leave the rest alone.

They’ve asked me to continue these treatments that I’d been doing that “stimulate” the liver and I refused.  Did you know you could do that? I often come across people who say they didn’t know they could refuse a Dr’s recommendation.  There are some circumstances where it wouldn’t be wise to do so (especially in the field I work in) but for the most part it is your choice.  You are paying them for their services, but their recommendations are just that, recommendations....you do not have to follow them, especially if you don’t feel they are the right thing for you.  Don’t get me wrong, you are refusing at your own risk, please be very aware of that, but if you are like me and have that intuitive, innate instinct of what works and what doesn’t then I highly recommend discussing other options. It is also important to note, I feel, that I’ve not refused treatment without having tried it first.

In any case, I feel I should apologize to them for being so obnoxious, but what I’ve been taught is that apology means you will not behave in the same way again and I certainly can’t promise anything of the sort.  I have come too far to step back and accept something that doesn’t ring true to me.  My hope is that we each are taking something positive away from these interactions, that we are learning from each other for whatever future reference it is needed for; because that is what life is about, taking what we’ve learned and applying it to future experiences, hopefully with better results each time we encounter a similar situation. I wouldn’t be so presumptuous as to assume the doctor(s) are learning anything intellectual from me, but perhaps that there are people out there that need a different kind of treatment, a different kind of interaction and my presence now will help them with those people later on.

Well, guess that’s all I’ve got for today, as always thanks for listening. Until I check in again Shalom (Peace:; full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Good results!

I got the test results of the biopsy back and, as my doctor suspected, they were negative- or benign.  So thankful for that! Even though he was confident the results would be as they eventually turned out, there is always that little niggling in the back of your mind that maybe he isn’t right, that maybe there will be some malignancy there.  It was a huge relief to have the actual confirmation of no malignancy.  I didn’t think it worried me that much, but a co-worker mentioned she noticed a definite difference in my appearance after having talked to the doctor.

So we have a treatment plan in place which includes some form of getting iodine into the thyroid quicker.  I have begun taking an iodine supplement, but they have an actual treatment that should be helpful.  The doctor did explain it to me, but I’ll have to wait to see what it is like before I can explain it here.

On another note, since I’ve started taking the iodine supplement I’ve noticed small differences. Nothing big (dang it) but I have noticed that my aches and pains have decreased a bit.  I still feel them, but not with the intensity I had prior to starting the iodine.  There are a couple other things but I’d like to wait and see if it is truly change, or just a phase, before I say anything.

Really that’s all for today, just saying again and again my thyroid is malignancy free and that there is a possibility of healing on the horizon!

Thanks for listening, until I check in again

Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Clarification

Well, now that I’m in a better mood.....thought I’d clarify a couple things.  I AM feeling better in some aspects.  I can get through the day without feeling like all I want to do is go back to sleep.  I have more days that I can be up and around doing things than previously.  I feel like I have some of my brain back, not sure I’ll ever recoup where I was because of age and possible permanent damage from lack of oxygenation.

Having said that, my top two complaints are interrupted sleep and that I can’t lose weight. A close third is the fact that the more I do the worse I feel, which means I can’t exercise (which I love to do).  SO from that perspective I’ve not seen much progress.  I am sleeping better, not more.  Before I started treatments at this most recent place I was stopping breathing to a dangerous point (I know this because of what I was waking up to), sometimes more than once at night.  I don’t have that issue anymore but waking up 2 or 3 times is a good night for me and doesn’t happen often.  This is why it frustrates me when the doctor is happy to tell me I am doing better. He is right, but my hesitation in admitting it is tied to the fact that my main complaints have not been improved as of yet. Believe me I get that whatever else is better was likely a priority, but that doesn’t change that these main complaints are important to me.

In any case, last week I had my biopsy done on my thyroid and the Dr said he would have the results in a couple of days and would then call and discuss them with my Dr.  I also requested a copy of the results for myself; I’d really like to have it in front of me when I talk to my Dr on Monday, but they told me it would probably take about a week for them to get to me, so not likely I’ll get them until mid-end of the week.

That’s it for now, I’ll check in again after I get the results from the biopsy. As always, thanks for listening Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Maybe some self re-evaluation is due

At my last dr’s visit as we were chatting about how I was doing, at one point he said “well great, you are doing better! that’s good news!”  I wanted to argue with him, but it made me think about whether I am truly better and not wanting to admit it, that maybe I am hanging on to this stage of illness more than I should be.  Should I be celebrating that I can work 4-5 days a week and still say I am overall feeling better?  Probably so. My issue is that I still spend the rest of the time on the couch, and there is not a lot of physical effort involved at work but it sill wears me out to the point that if I am working all week, I can’t do anything on the weekend.  The more I work the worse I feel.  It’s a matter of perspective, I guess.  I’ve whittled my life down to so very little that of course I’m going to feel better, I’m not doing anything to make myself feel worse....like exercise, or even just spending energy with crafting or house work.

I’m generally a pretty optimistic person. I usually look on the bright side, find a way to reason myself through things, think about the positive possibilities.  But this has got me down, I’ve been dealing with it for so long and there doesn’t seem to be an end; it is hard to find the positive.  Besides which, I was reading about the thyroid the other day and even my indomitable spirit can’t overcome the effects of the messed up thyroid which can cause anxiety (don’t feel like I have to deal with that) and depression (definitely dealing with that).

Don’t tell me to choose joy, I have come to hate that statement, it just isn’t always possible.  Don’t tell me to look on the bright side, I’ve been doing that for a long time and there no longer seems to be one; I’ve lost a decade of life and that is hard to swallow, especially when it feels like this is all there is for the rest of my life. Don’t tell me to focus on the positive; I am a very positive person, generally seeing the good in the bad and I do see the positive outcomes from all this, but when you struggle for a prolonged period of time you can’t help but to become weary.  Don’t tell me I’m better when I still feel like my body doesn’t work right and I can’t do anything more than just exist.

Didn’t really realize this was going to be such a negative post, but it is part of my reality so I will still post it.

As always, thanks for listening Until I check in again Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Coming to recognize the signs

When I go to a new dr (which I have done many times) it takes a while to get to know them a bit, just like in any new situation.  But it is getting to recognize the signs that is the most important....the signs that they don’t understand or don’t have an answer for you. 

“That just happens sometimes” “Some people’s bodies will process that way” anything along those lines that are vague and “non answers” really means they don’t have an answer for you and don’t want to say it out loud, or possibly that they don’t even want to admit it to themselves.  I’ve learned to hear the signals.  I don’t disregard the symptom they seem to dismiss, but I understand they don’t have an answer for me regarding it.  So I keep tabs on it myself.  I’ve been through many doctors because they don’t believe me or think I’m making things up or that the symptoms are psychosomatic or things I’m making up to get attention.  I made sure at this clinic that they understood I need them to believe me when I tell them things; they’ve done a good job of making me believe they do, but I got a lot of non answers at this last appointment.

I have refused the main treatment they’ve been providing, I’m sure they are thinking that is why some of my symptoms are worse.  But I have this innate knowledge of my body and what is best for it and I know that right now their suggestion just isn’t right for me.  Thankfully they are willing to work with me, we are going to focus on thyroid treatments (once we get the biopsy back) and perhaps other things but no more bio-thermal treatments for a while, because though they make my blood work come back good, they make me loose sleep, which makes me feel worse.

So I’ll track my symptoms that would get lost in a black hole otherwise, I’ll listen and do as I’m asked as long as it sounds and feels right for my body.  In the mean time I’m reading yet another book with yet another possibility of healing through food.  I’ll talk more about that once I find out if it works....or not!

As always, thanks for listening Shalom (Peace:; full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Nothing definite yet

Well I went to the Dr, talked to him about the ultrasound report.  Basically, he can’t really say anything until we get a biopsy of the node; he did seem to be optimistic that it is likely benign, however.  He did a full re-examination and we got to see my progress in other areas as well.

So my calves, which have been cramped since 2011, are getting better! Each time he tests them (by putting a blood pressure cuff on them) they can withstand a little more pressure. This is great, I have noticed that they are not quite so painful and have been trying to do mild exercises to strengthen them

My lungs and adrenal functions have gone down a bit.  In fact my lung capacity is worse than when I first started going there.  This concerns me more than a little bit.  They did originally give me breathing exercises to do, but with working more lately I’ve not been doing them (because I use all my energy for work and doing any kind of anything extra feels like too much). So I’ll just have to be sure to do them, probably modified, to get myself to do them on a daily basis.

Something that showed up that I don’t think has before is that my lymph system is congested...this can be dangerous, or it can be nothing.  He prescribed a spray to used daily to get things moving, plus I’ll do lymph massage and the breathing exercises should help as well.  I’m going to try not to worry too much about this at this time and just do anything I can to get things moving (lymph system is supported by cardio, which is why breathing should help).

Finally, I tried to set up the biopsy right away but have run into some issues.  Turns out the place I got the ultrasound done doesn’t do biopsies.  So I opted for my second choice, another place I’ve already been to once (so they have me on file) but they wanted the original ultrasound pictures, which we didn’t get with the results. I don’t think my dr requested them because he does what he can to try to save me money.  SO the clinic I am planning on going to is requesting them from the clinic I got them at.  THEN the doctor who does the biopsy has to review them AND DECIDE IF HE’LL DO THE BIOPSY OR NOT!!!  I guess if it is too inaccessible he will not do it.  I don’t think that will be a problem, but what do I know?  So I sit and wait and remind myself God’s timing is perfect and wait to hear back from the clinic.

That’s it for now, thank you for your prayers, they are well felt and appreciated

Thanks for listening, until I check in again Shalom (peace: full thriving flourishing happiness, prosperity, health and completeness)

[livlovlrn]

Scary stuff

This is why you keep asking, keep pushing until you find an answer that makes sense. Don’t accept answers that don’t answer the questions you’ve asked.  Don’t accept diagnoses that don’t make sense for the symptoms you are dealing with.  I have had blood tests done for my thyroid many times over the years and they always come back normal.  However, a doctor told me about 9 years ago that he could feel a node on my thyroid.  My current doctor told me I have a goider (swelling in the neck from the thyroid). We had planned an ultrasound of my thyroid, but when they got the positive results for ebstein barre syndrome they told me they thought they had figured out my health issue and that I no longer needed the ultrasound, so I cancelled it.

Since then I had to stop going for treatments for a little while due to decreased household income, but as soon as Brian got a new job I set things in motion to get the ultrasound and then an appt with my doctor...so glad I pushed through on this because here are the results

I don’t know a whole lot about what this means, but my research has shown that complex cysts are more likely to be cancerous.  I live a pretty healthy life style as far as eating is concerned but the node has been there for a number of years and that there are 3 components concerns me quite a bit.  I’m trying not to panic too much until after I talk to my doctor. Really there is no certainty as to the type of problem until a biopsy is done so it’s probably best to go on as usual until I get all the information.  Praying there will be a positive answer to this revelation, until I have more information that’s all I have.

Remember to keep asking questions, don’t be afraid to pester professionals, listen to your body and go from there.

As always thanks for listening, Until I check in again Shalom (Peace: full thriving flourishing happiness, prosperity, health and completeness)