Tag: Asthma

Share Your Story – Nechama Sklar

On By WendyIn Chronic Illness9 Comments

I’m proud to present to first contributor to Share Your Story.  Nechama Sklar is a chronic illness warrior and writes at The Life You Gave Me.  After her story is a small bio about her.  I encourage you to jump over and check out this young woman’s blog.  I’m sure you will become a follower just like I am.

I am Nechama and I have a chronic disorder known as MCAS, mast cell activation syndrome. Basically, my cells are having way too much fun done, treating many things that should be harmless as dangerous invaders.

When I am exposed to one of those triggers, my body desperately tries to get rid of it, any way it can. It usually doesn’t go for the typical reactions. Coughing fights, muscle spasms, flushing, and chest tightness are more its style. On some occasions those tiny little cells that are supposed to protect me even send me into anaphylaxis, a life-threatening allergic reaction that can kill if not treated properly. And for some reason no one understands, my spasms can get so bad I cannot eat or drink.

Because my body is so busy trying to get rid of all the false threats, it doesn’t have time or cells left to deal with the serious things like infections. The way my doctor explained it to me, it’s like the police officer who is so focused on stopping the old lady from jaywalking that he misses the robber robbing the bank across the street.

My severe immunodeficiency means I pretty much never go more than a few days without an infection. And not just strep or sinus infections – though I get those too – all my infections seems to spread throughout my body, and I’ve gotten some crazy infections that required weeks of antibiotics, including an infection in my heart that landed me in the hospital for four weeks.

I also have some other disorders, like GERD (acid reflux), asthma and lots of other symptoms no one can make heads or tails of. So now you know you know a little bit about me.  

How do I keep going every day? I tell myself one crucial message I think anyone who a chronic illness or any kind of hardship needs to hear at least once a day: even if I were to fall a hundred times in one day, I would still get up. It’s a line from Rabbi Nachman of Breslov.

Because no matter how hard our lives are, no matter how many times life throws us to the floor, we stand everything to gain by getting up again. I have a strong support system that i made to fall back on at times like these. My support system is my family, my friends, my blog, my journal, groups on social media, mentors.

They have taught me that you can not choose your circumstances – only how you respond to them.You cannot choose your battles, you can choose how you fight them. And that keeps me going – knowing that I choose to take control over the one area where I have control – my reactions to circumstances.

You see, I used to believe I was a victim. But I’ve learned that I am a handpicked warrior.I have learned just how strong i can be when put to the test. I have learned that i can fight, fight to the death. I have learned that even though this illness has taken so much from me, it has given me strength  to endure – well – anything really.

Now, don’t get me wrong. How many times have I cried? How many times have I wanted to put my hands up in defeat and say, “I can’t any longer”? How many times have I told God that I am not strong enough, that I can’t take it anymore?

Many, many times. There have been days where I was sure that I would just break. Days where I really did break. Those were the worst times in my life, days where I felt I had no one to turn to and nowhere to run. So I cried. And I moped. And some days I just stayed in bed and watched movies.

There was one time when I was in-patient in the hospital. The hospital couldn’t figure out why I couldn’t eat, so they thought I had made it all up. They came into my room and told me I had an eating disorder and that they would send me to an eating disorder clinic for a few months, however long it took, until I would “let myself eat again.”

It was the most awful time in my life. Worse than the times I was going into anaphylaxis every three days. Worse than the time when they told me I had a heart infection and could go into septic shock at any time. Because there is no place lonelier on earth than when people don’t believe you.

After the hospital told me that, I went completely mute. I refused to speak to the doctors who could make such an awful, distorted accusation. My family and I were horrified at the claims. There was nothing in the world I wanted more than to eat! But my body just would not let me.

I just cried and cried into my prayer book. I cried until the pages were soaked. I turned to G~d and said, “How could you do this to me? I have no one left who believes in me. No one left who cares about the truth. No one but You. You carry me, and you hold me because I have nothing but rocks to walk on.”

And He did. The hospital sent in the head of the psych team to get me to talk, and when I saw he was listening, we had a good talk, and he believed me. He gave me an antispasmodic medicine and within half an hour, I was eating. (So much for the eating disorder claims.)

I quickly learned that there was a team of doctors from a different hospital that had believed me all along. Many of them were certain that I did not have an eating disorder.
Not long after came the Jewish holiday of Passover. It is the time were need celebrate our miraculous exodus from our bondage in Egypt.as a orthodox Jew, me and my family and the many other religious families in the hospital celebrated.

Never had I felt more free. I knew then, that miracles do happen. ~and no matter how tough it seems~ we can all have miracles~ if we believe.

Is my journey over? Not by a long shot. My cells and me fight every day. The flares never seem to end and there always seems to be more problems than solutions.

But deep down, whenever I feel like giving up, I know that all hope is not lost.

Another thing that has really been transformative for me is an incredible idea that I hear in a shiur by rabbi yy jacobson  that i have carried in my heart. He says that challenges are Hashem’s way of giving some of himself to us, connecting to us in the deepest way. When he draws us close, it is too much for us fragile humans.  We shatter from being so close. That is the pain of yissurim .

So be strong. And hold on tight to Hashem. Our challenges are not an act of torture, they are an act of love. An act of being brought close to Hashem.

If you believe in yourself, in your loved ones, in G~d, you just better believe it~ there are miracles. And they come to those who stay strong and believe.

nechama

I’m a 17-year-old teen ultra-orthodox Jew who lives in Brooklyn, NY.  I have MCAS , or mast cell activation syndrome- an allergic disorder that makes me allergic to- well, just about everything.

I have a primary immunodeficiency – a very long word that basically means I am also sick with one kind of infection or another.

I also have asthma and some form of autonomic dysfunction we are working on a diagnosis for.

I started my blog at a really low point in my life. I was in the hospital, physically unable to eat or drink. I would have given anything to eat or drink just one drop then.But the doctors in the hospital told me it was anxiety and were going to send me to an eating disorder clinic. I felt totally alone. I needed to share my feelings. I needed someone to hear me. And so, i let out my feelings to the world wide web. Thankfully, i got out of there safely, eating and drinking and not another word about eating disorders. Since then, my vision for my blog has expanded to include spreading awareness for all kinds of chronic disorders and providing support, coping skills and health tips for others with chronic illness.

I also run 2 online groups on facebook for those with chronic illness:teen mast cell warriors– for support, advice and encouragement for others teens and tweens fighting with a mast cell disease and let’s stay positive with chronic illness – a group with positivity challenges and quotes for staying happy with chronic illness.

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Chronic Illnesses, one comes up, another is put on hold….

On By WendyIn Chronic Illness16 Comments

I know, I haven’t posted in a while.  I feel like all I do is the same old thing, talk about me, and how I’m falling apart….or how I’m dealing with my life and not falling apart. Hopefully the later more than the former.

Well, here I am again, writing about things going on in my life….I was writing a friend a letter and thought, I really should put this in a post.  This is part of the reason I started a blog.  It isn’t just for other people, it is for me.  To get things out, and to keep up with things.  Sorry folks, I hope you don’t mind sometimes just coming along for the ride.
image courtesy of pixgood.com
image courtesy of pixgood.com
Of course one of the main reasons I started this blog  is to let people know they aren’t alone on this Chronic Illness journey.  If you are anything like me, if you have one Chronic Illness, you have more….and things are always coming up…..so this is what’s going on right now……I’m a little overwhelmed…again.  I’m trying hard to take it one moment at a time, then some times I’ll sit down and think about everything that is going on and just feel drained.  Whew!  Am I really stressed and just don’t know it?
I seem to always have something new come up and have to deal with it, then I have to put something else on hold.  You will understand as I continue.  I’m going to try to make this as short as possible.
I’ve had some bladder/urinary tract troubles.  I’ve been to a few doctors for this, they run a urine test and it comes back clear, my blood work comes back clear.  But I’m in severe pain.  They will call it, bladder spasms, irritable bladder, non-infection cystitis….but they all say, they think I have Interstitial cystitis.  I need to go to a urologist to be properly diagnosed and to get better medications to help with it, but there is no cure, and some people don’t react to the treatments.  I’m lucky I don’t have severe flare-ups very often.  However, I do have little flare-ups often.  This has been a VERY SEVERE flare.  I went to the doctor on Monday, February 2nd.  Of course, everything was clear, but I felt I needed to go to make sure I didn’t have an infection.  She did give me an anti-spasmotic and they helped get me through the rest of the flare.
This sweet doctor was scratching her head with me, she said, “You have a lot going on for such a young lady.”  She kept saying, she couldn’t help but wonder if there wasn’t one thing that caused many of my issues.  Some umbrella condition.  You know I’ve never had a doctor say that to me before.  I’ve had Stuart say it, and friends say it, people on my blog say it, but doctors, not so much.  I couple of doctors have thought my migraines and Meniere’s may have a commonality but then they kind of ruled that out…maybe….kind of.  I think I might just talk to her again.  (she works with my new PCP)

On the way home from this doctor’s appointment I had a vertigo attack start.  Got home and it was BAD.  I’ll leave it at that.  You all know how what a BAD vertigo attack is like.  I didn’t keep up with how long it lasted.  I know my appointment was at 12:30pm and she was on time, and I was finally able to fall asleep WAY after dark.  I woke up sick again and it was about 11pm.  I was so nauseous for 2 days.  I’m not normally like that.  Usually after an attack the nausea leaves me after a few hours.  The anti-nausea meds work pretty well.  This time, I was really sick for days.  Ick.

On that Monday I was supposed to have my intake evaluation to start my physical therapy for my hip.  This had to be rescheduled.  They didn’t have anyone who could do this for TWO weeks.  1st thing that was put off because of something else going on with me.

The next day I had an appointment with a new neurologist at the Headache Clinic.  I had to reschedule because I was simply too exhausted to even move my head, and too nauseous.  I was afraid if I pushed it I would have vertigo again.  Now my appointment is in March. *sigh*  2st thing that was put off because of something else going on with me.

I went to see a new Pulmonologist on January 30th.  My breathing test came out good.  I do not have COPD.  That’s good to know.  So why am I coughing up phlegm every day?  EVERY DAY since October of 2012?  Yes my breathing is better, but this coughing up stuff is gross.  I get awful looks.  People seem to think I have some horrible disease.  I’m on 3 medications for Asthma that I take every day, and I have an inhaler, that I use often, and nebulizer.  And my new doctor said, “I don’t know if you have Asthma.”  What?  He said he needs to see my old records.  He also said that you can be clinically diagnosed as having asthma but they actually have to do a test to really diagnose you, and they often don’t do this test.  A lot of people don’t want to do this test, they’d rather just be treated for the symptoms.  Usually the symptoms present themselves so clearly that they are sure enough that they clinically diagnose it.  That is what the doctors did with me.  However, I was not presenting with the symptoms when he saw me.  So he needs to see my records.
There is a possibility that my acid reflux may have something to do with this cough.  So I need to have a barium swallow on Friday, February 6th .  Oh wait….I was still too wiped out from the vertigo attack and in too much pain from the flare-up to be able to do this, so I had to reschedule to February 20th.  3rd thing that had to be put off because of something else that is going on with me.
I did finally get an appointment set up for the CT scan for my hip.  It is set up for this Friday, February 13th.  I will know soon if my hip does in fact have avascular necrosis.  If it doesn’t I do hope this CT scan shows what the problem is, with all the pain I am in, I will be very disheartened if the doctor tells me he can’t find anything.   (not that I’m looking forward to, or wanting, a hip replacement)
Trying hard not to think about what may be, just living in the now, and waiting for what will come.  After all, none of my worrying about it will change anything.

Want to hear something really funny.  After all of the things I’ve been through.  All the crazy tests, all the things I’ve been told to give up….different foods and such (for example, I eat mostly whole foods, no refined sugar or gluten. I only drink water.  I can’t eat onions, garlic, apples, pears….all kinds of foods…it’s challenging sometimes.  But I have to use these food restriction of I get sick.)   I have been told in the past to restrict my intake of chocolate because of migraines.  Well, I found I could still have a square of dark chocolate now and then and it didn’t bother me.  I just didn’t over do it and I was fine.  Really, I could eat more and I didn’t have problems with my head, my tummy or bladder might not like it because of the caffeine, but my head was OK.  But if I limited it to my little square I was good, all the way around.  And I was a happy girl.  I could still have chocolate.

Dark Chocolate image from medicalnewstoday.com
Dark Chocolate
image from medicalnewstoday.com
Then it happened.  I had my square and immediately I got the worst migraine.  Oh no!  and my bladder started to scream!  What?  No!!!!
I waited a week.  I tried it again.  It happened again!  NOOOOOO!  Not chocolate!!!!
I literally cried!
I’ve given up so much.
my beloved apples.
dried fruit.
asparagus
onions and garlic
NOT CHOCOLATE!!!!
The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!

 

A time to think of my…Gratitudes.

On By WendyIn Chronic Illness9 Comments

 

gratitude quote

There are days when you have a hard time.  Days when you can’t think of anything but what is going wrong.  It’s on those days that I find it most important to step back and look around me at the things I’m grateful for.

Today is a day I want to really look around and pay attention to what is in front of me, I know I have so much to be grateful for!

  • I’m grateful I woke up today.   What?  You think I’m joking?  I thought I’d start at the beginning of my day, and I thought what is the first think I’m grateful for today?  I’m grateful I’m here.  I’m grateful that I’m alive.  I’m grateful I can breathe.  Oh there is a good one!  Last night I had a very difficult time breathing, I coughed and coughed, and had a hard time taking a deep breath.  I had used my inhaler and it didn’t seem to do anything.  I did a nebulizer treatment, and I could breathe better, but of course I had the shakes for a long time afterward (I really hate that thing, a necessary evil).  Then I started coughing again, and well, it was a not so great breathing night.  Just one of those nights for me.  I did sleep without much coughing, so that is great!  We’re working on getting the chronic bronchitis under control, but haven’t gotten there yet.  I’m not complaining.  Last night was a rougher night than usual, the weather changed….rainy, damp…that makes it worse.  Again, not complaining, just stating the facts.  I accept it as it is, and I am fine with it.  I will be going to a new pulmonologist soon and we will work at getting this more under control.  I am very grateful that I can breathe better today.
  • I’m grateful my husband can walk our new dog every morning, and she is so good about it!  When we first talked about getting another dog Stuart said he didn’t want to have to walk it.  Then we met Kiki, and knew she was the right dog.  I was having hip problems, but thought it was going to be over very soon.  The doctors thought it was just a little inflammation, I was scheduled to get a hip injection and they thought that would be the end of it.  So when we decided to start fostering Kiki, I had planned to be the major caregiver.  Little did we know I would fall the night after my injection causing me to have a herniated disc in my back, and now a month later, I’m still not walking Kiki.  I’m still not walking much at all.  However, Kiki is the best dog about taking walks.  If you are in a hurry, she will go very fast.  She isn’t the kind of dog who will just go out and sniff and sniff just for the sake of it.  If you go out and walk out to the tree and then walk back toward the house, she will go.  No problem.  Often, in the mornings she will run Stuart outside, go real fast, and run back in and go back to bed!  She says….”Bye Dad!  I’m ready to go back to sleep!”  He has even said that he likes taking her for walks!  I’m a little envious.  I’m very grateful they have bonded and the walking issue, never became an issue!
  • I’m very grateful my doctor thinks my herniated disc will heal with just a little physical therapy.  Yep, right now I’m bored out of my mind.  I’m so tired of not being able to do anything. I can’t walk far without pain, I keep waking up because of pain, I can’t sit long without pain, well it just hurts.  I’m so relieved that the spine specialist thinks that I will heal with very conservative treatment!  Yay!!   I’ll happy dance when I can!!
  • I’m grateful I didn’t gain weight while taking steroids.  Oh boy, oh boy can we get happy about this one?!  The steroids made me go out of my mind, I was climbing the walls and wanted to destroy people, but I didn’t gain weight!  I didn’t weigh myself for the past month, it was too hard to try to step on the scales, I finally weighed this past week.  I lost 4 pounds!   For inquiring minds….that is a total of 44 pounds lost so far!! 
  • I’m grateful I understand I can’t trust my emotions right now because of the steroids.  I was actually very proud of myself for my self control and for understanding that it was the steroids that were making me feel so horrible.  They are still nagging at me a bit, I have one more dose, but you know it will take a little while before they are out of my system….so I can’t trust my emotions.  That is a good thing to keep in mind.  It is very difficult for someone who is bipolar to feel this way.  I am always very on top of my emotions, very in tuned to how I’m feeling.  I have to be.  If I start noticing that my feelings are our of sync with how they should be, I need to talk to my doctor.  By this I mean, I need to watch out if  react to something in an inappropriate way.  For instance, the other day, I said to Stuart, “Why don’t you use your damn common sense once in a while?!?”  in reaction to him just asking me a simple question.  This was VERY inappropiate!  I do not talk to him that way, and I couldn’t calm down.  I was sitting there suddenly saying….”I don’t act like this any more!  I don’t feel like this anymore!”   I took some deep breaths, centered myself, and calmed down.  Apologized over and over to my dear husband and explained I couldn’t help it and it would probably happen again.  I was full of anger I couldn’t control and he was probably going to get the brunt of it.  He was a dear sweet love and hugged me and understood.  Yes, he did get it a couple of other times, nothing like that time, and we dealt with it very well because we talked about it and how the medication was affecting me.  I’m so grateful I have a husband that communicates with me and understands about uncontrollable emotions due to steroids.
  • I’m grateful for a small place to live.  I’m grateful for a place to live that is safe.  I’m grateful for a place to live that is peaceful.  I’m grateful for our place.  I have been a little ungrateful for out little place lately, and just now I realized just how very grateful I am for this place.  I really do love this little place in many ways.  I love that it is small.  I am very grateful I do not have to climb stairs right now.  I couldn’t.  It is so much easier for me to get around this little place.  I have been feeling a bit claustrophobic in here lately, and way too isolated.  I know it’s because I just can’t do anything.  My mind wants to do something and my body says NO.  (yeah I’m working on that)  I’m very grateful that of all the places we looked at to rent we found this peaceful little place.  It is quiet here, (yes that is so important to a deaf person…haha).  There is little traffic on the street.  There are more people out walking their dogs in my neighborhood than there their are cars that pass by!  I just think that is so cool!  Yes, as I write this little piece I’m much more grateful about the place I live.
  • I’m grateful Kiki loves her new toy so much!  Yes it is the little things that bring joy into our lives!  Kiki loves her little toy so much!  She has forsaken all of her other toys for the one she picked out at the pet store.  It is a little beaver…I think.  It has a recycled bottle inside so it crunches, and it has a squeaky toy in the tail.  She loves this thing so much!   She carries it around, and gets so excited.  She will chase it, she will play hide and seek with it, she will run and get it and bring it to you just to show it to you…..”Look!  LOOK!  SEE! my toy!!!!”   She takes it to bed with her.  She doesn’t play with it in bed, no she just has to have it with her.   If I’m in a different room she will go check on me then she will go and get her toy and bring it to the door and show it to me….like she is showing the toy where I am??  Then she will leave.   She has so much fun with her toy, and it brings me much joy playing with her with it, and just watching her with this toy!  I will never get tired of watching her play!
  • I’m grateful my husband took me out yesterday for a short trip to the mall and I found a bra that fit – First Try On!!!  don’t really need to follow up on that one….but I will!  I must say, this is the very first time this has happened, and it is amazing to me.  After losing so much weight I went in and completely guessed my size!  I was not up to trying on a lot, this bra was on mega sale and I thought, OK, I’ll try it.  I had on an old bra that was too small, so I adjusted the size from it….and Wow!  I’m still amazed that it fit, and it just looks and feels so great.  No gaps, no pinching, no pulling…..I’m a happy woman!  It was also on such a mega sale I won’t feel bad if  when I lose more weight and soon need a different size!  One thing that is a little different about me losing weight….I have bigger boobs.  I’ve always liked my breast.  I have felt they were just the right size, not too big, not too small…just right.  When I gain weight, they have always stayed pretty much the same.  They didn’t get really big with me.  (a lot of women gain a lot there, I didn’t.)  Yes I’m silly, but just thinking about it, if things keep going as they are I’m going to be a bit bigger.  Right now I’m a cup size bigger than I normally am at this band size.  Stuart likes it.  hahaha  However, I can’t imagine him not liking anything about my body….he is a bit biased.   and I’m very grateful for that!
  • oh there is so much to be grateful for!!   I’m feeling so much better than I was when I started this post!  I’m grateful I have so much to be grateful for...here’s a few more….
  • I’m grateful I got to tell my sister how I was feeling about some things.  It doesn’t matter if things don’t change,  I’m just so grateful that we talked and I know she knows some things now that were stuck in my head and I needed to let it out.  It’s hard to put some things in the past if you don’t know if other people have put it there, or heck, if they even know about it.  Yeah, try to wrap your head around that one.  I just feel better about things.  I’m grateful for that.
  • I’m grateful that I’m emotional.  (no one needs to understand that one.  It just really used to bother me, now, I’m glad.  I like having deep feelings.  It may hurt a lot sometimes, but it is also pretty darn great other times.  Being “emotional” is not a bad thing.)
  • I’m grateful I found this meditation on forgiveness….I needed it…. Forgiveness Meditation    (this is just a written page, not a link to a guided meditation, read if you want.  I liked it a lot.)
  • I’m grateful I have some friends I can reach out to, even if I don’t have any I can see in person.
  • I’m grateful I have clean water.  (I really don’t like the water from our tap here, we have started using bottled water, and I’m so grateful for it.  It really makes me think a lot about people who can’t get clean water at all.  I’m so very grateful that not only do I have running water in my home, but I am able to get wonderfully clean water whenever I want it.
  • I’m grateful I have access to fresh food.  Something else I have thought about a lot lately.  I have talked a lot about the change in my diet, how I’ve lost so much weight and how much healthier I am because of my new eating habits.  I haven’t mentioned some of the other things I’ve noticed that I can only attribute to my diet change.  My hair is thicker.  My fingernails smoother and less brittle.  My skin is clearer.  I can tell you I haven’t changed my hair products, nor have I done anything different to my nails, so I can only attribute those changes to my diet.  I did change my facial wash, but I will admit I don’t use it every day.  I am a self proclaimed foodie.  I love good food.  I love fresh food.  I’m grateful that even though we have had very lean times over the past couple of years, we have always managed to eat as fresh as possible.  We have cut corners every where we could so we could spend a little more on our groceries.   We do still spend wisely in the grocery store, but let’s face it, fresh fruits, veggies, and high quality meats are expensive.   For some people it is a matter of choice, but sometimes it is a matter of not being able to afford food…period.  Can you imagine if you simply could not afford to buy groceries at all?   There are so many people who go to bed hungry every night.  So many people who are malnourished.     My gratefulness about food is huge.  I’m so grateful that I now have the knowledge to be able to nourish my body in a healthy way, and am able to provide it with all the food that it needs.
  • I’m grateful I have this blog to write about things….and I’m very grateful that there are some people out there that read it.   Yep….this is what I needed today.

 

I really do appreciate life so much!

I love my life!

Do I have challenging days?  Yes!

Will I feel bad on days again?  Yes!

Do I accept my life the way it is?  Yes!

Do I wish it were different?  Sometimes….I’m working on a NO for that answer, but I think “Sometimes”  is pretty good.   I still love my life, just as it is, even if nothing changes, even if it gets worse, I still love my life!!

That’s pretty important I think.  I love my life, all the good parts, all the bad parts, all the fun parts, all the hard parts….I love my life!

 

Sick and Confuddled

On By WendyIn Chronic Illness16 Comments
mushroom with quote
photo by S. Holcombe.

I recently wrote a post that could easily have taken up 3 posts worth of writing.  You know if I wrote that much in one sitting I have a lot on my mind.  You also know if I’m making up words to say how I feel, I’m in a one heck of a state!

Some of the things I have written you will still see, I’m breaking it up into a couple of post, some of it you won’t….I have decided I just can’t talk about it here.  Maybe some day, but not now.  I want to, I think it will help some people, but it’s just something that I can’t talk about yet, at least not here.  And that’s hard on me, for a number of reasons.

So…on to what I will talk about…   (and it turns out this post is MUCH longer than anticipated….yep it’s one of those days.  as you get to the end you will understand, but forgive any errors please, I couldn’t go through and edit this, I am in too much pain.  But I wanted to get it posted.  at least part of it needs a voice…..)

Saturday my father and sister came for a little visit.  It was nice.  Even though we only live one state away we don’t get to see each other much.  They don’t get to come often, and I can’t travel very often.  Unfortunately, since our trip to Tucson, 2 years ago, I haven’t been able to travel at all.  I thought it was going to be better the last few months, but then I hurt my hip.  Now I can’t ride in the car across town without being in severe pain.  So who knows when I can go to South Carolina.  Thankfully, my sister brought my dad to see me.  We had a nice lunch and visit, then they were on their way.  Before they came I decided to get a shot of Toradol, an anti-inflamatory to help me not be in intense pain while they were here.  I wish I could have them more often, but you can’t take them on a regular basis.  I was very pleased that I could visit with them without worrying too much about the pain.  I was also happy I could hear them fairly well.  I couldn’t hear my father at first, but after a little while I realized if I sat closer to him I could hear him better.  What a relief.  I felt bad that I could understand everyone else, but was having such difficulty understanding him.  All in all, a good visit.

After they left I decided my hip was still feeling well enough we could go and meet the dear lady from the agency who had Kiki and make her adoption final.  So off the Pet Supermarket we went.  Luckily, they are very nice there and let me have a chair to sit in while we shopped a bit and adopted our newest family member.  Since the vet thinks Kiki is between 1 1/2 and 2 1/2 we decided that her adoption date is her 2nd birthday!  So September 27th is her birthday!  She was lavished with gifts.  She got a new sweater, because she has been cold on some of these early fall mornings when she goes out.  It is red, and looks quite fetching on her sleek black and white body.  She also got a new toy that she loves!  She has abandoned all of her other toys for this toy, it is so funny!  She also got a new tag, a little purple heart with her name and phone number on it….we need to get her microchip reprogrammed.  She is officially ours now!   I was so very happy when we were in the store and one of the people who work there told me that he had seen Kiki so often when she was there waiting to be adopted and she looks like a different dog.  She is so happy and well mannered.  He said it is amazing how much she has changed in just the short time we have had her.  That couldn’t have made me happier.  I knew then, that yes, Kiki really was meant to be our little girl.

Saturday night I was getting ready for bed.  I was sitting on the side of the bed taking my night meds and suddenly I felt the Meniere’s signals.  Okay, this has not been unusual lately.  I’ve been very acute for the past month or more.  Having mini attacks many times a day, so I wasn’t worried.  I took a deep breath and calmly tried to focus.  Then FLUSH..heat through my body.  Ugh. OK.  Calm. Focus.  You got this.  Whoosh.  better lie down.   Focus.  feel the hand on the table it is steady.  you are not moving.  HEAT.  HOT. I’M ON FIRE.  Stuart walks in.  “Attack?”  “yep. ice.”  Focus.  breathe deep. calm. calm.  Spinning faster.  wow.  deep breath. focus calm. you got this. it’s ok.  spin. stop. spin. stop.  breath…..Ice..Good!  Still hot.  chest hurts.  can’t breath deep.  calm. spinning fast still.  calm. calm.   it’s ok.  it’s part of you.  you can do it.   “Stuart…shot please”   focus calm.  calm. so tired.  (took meds earlier.  Stuart got shot ready,(I’m lucky I have Phenergan shots available to me, it is an anti-nausea/vomiting drug) he was about to give it to me and dropped it. Couldn’t find it.  suddenly spinning stopped.  yes.  OK. rest.

BAM. started going the other way!  What the?   OK…calm down. but this is weird.  you can do it.  focus. feel your hand. –  what the heck is happening? this is not right. –  it’s  all OK.  focus. calm calm.  focus.  it’s just different. – no, this is very different.  now it’s jumping all around.  what is going on? –  calm down. calm down.  calm calm.  focus. it’s kind of freaking me out he can’t find that shot – focus on your focal point.  it will be alright.  – I need the damn shot!  I’m getting scared. –  shhhh. calm down. focus. focus.  breathe.  calm..calm.  this is not real.  the room is not moving.  You are not moving.  calm breathe.  – Ah…shot.  It will be better soon. –  Calm…calm…shhh.  AH! oh my gosh….”Stuart”.  “I’m right here babe. I’m not leaving you.”  “I can’t stay awake.  I’m all dopey.  If I fall asleep it gets worse!  I’m so sick.  I’m scared.  It hurts.  My stomach hurts.”  “I’m right here, you are safe.  I’ll try and keep you awake if you want”

This went on for a long while.  I kept dozing off no matter what.  It was horrible.  I would wake up spinning even more!  Then I got VERY sick.  I was going to throw up.  But nothing came up.  I just gagged, and coughed, and mucus from my lungs came up.  I couldn’t take a breath in!  I had this huge gag that felt like vomit was coming up but it was like a HUGE burp came up then I couldn’t breathe.  My lungs hurt. I was having an asthma attack and trying to throw up at the same time! I was so afraid I was going to have to go to the ER because I could not breathe.  Stuart was holding me putting my inhaler in my mouth for me.  I got enough in to breathe again.  (afterward he told he kept watching to make sure I was getting in some air and not having any signs of needing oxygen….but he is also thinking we may need to see about getting oxygen for me at home.)

Finally, it calmed down enough that when I dozed I stayed asleep.  And I slept!   The pain from my hip did not wake me up at all that night.  I was so exhausted.

The next day, was hangover hell.

I felt so bad.  I was trying so hard not to feel like I handled thing badly.  I really freaked out.  I panicked bad.  I couldn’t stay mindful.  I couldn’t accept what was happening to me.  I hated my body, I hated my life, I was afraid I was dying and hoping I’d just hurry up and die at the same time.

This is not what I have been working so hard on.  This is not mindfulness.  But it is.  Mindfulness is a practice.  You can’t beat yourself up if you don’t live up to your expectations all the time.

Mindfulness is not just about making it better. It is about feeling how you are, how things are now, and not being judgmental about it.  It is about being gentle with yourself.  On Saturday night, I could not accept my condition.  I could not handle my situation without panicking.   That was the way it was.  I could feel every nerve in my body screaming that it wanted this to end.  I couldn’t accept that this was just the was it was…I fought it.   But I was there with it.   I had a hard time looking back at it non-judgmentally.   But now I can.  I can look back and say, I had a damn hard night.  I handled it the best I could.  Things happened that have never happened before, and it really scared me.  Who knows, I may have handled it better than I would have in the past, because of my mindfulness practice?  I’m okay with how I handled it.  At first I was sad about it.  I felt like I failed myself.  I didn’t.   Mindfulness is hard.   Living mindfully is not easy.  But it does making living your life easier.  Or at least it has mine.

So I’m off to being more accepting of how my life is, even when it’s that bad.  It’s my life.  It’s much easier on me when I accept that.  If I try to fight it, it makes it worse.  It really is better when I accept that I have my illnesses, and I have the symptoms, and all the things that they cause.   I have found that I can deal with those symptoms better when I stop fighting them so hard.  I feel better.  I cope better.  Heck, the symptoms have been easier.

I’m just saying how I feel about all of this, I’m feel I’m just testifying..haha.  I’ll write a more coherent post about this sometime.  With references.  Or maybe I’ll find a guest writer.  Who knows.  For now, we’ll just see how it goes with me….hope that’s alright with all of you.

On Sunday, I decided I couldn’t stand the pain and the constant Meniere’s attacks any longer.  They use steroids to break both cycles.  However, too high of a dose of steroids can really mess you up with Meniere’s and make you have worse attacks.  So I started on the dose that the urgent care doctor gave me and put a call in to my otologist at Duke on Monday.  Unfortunately, it was phone tag for a few days, and then he wasn’t comfortable messing with this prescription.  I do not think he understood the situation!!  I am so beside myself right now!  I mean right now, I just found out about this.  I am looking at these pills trying my best to figure out the best way to ramp down off of them without it being too drastic.  Going from 4 on one day to 2 on the next is not a good idea.  So I take out the prescription bottle and count how many I have left.  10.  Wait, I should have more than that to meet the original prescription.  I count again.  10.  STRESS!  I filled this prescription weeks ago.  Will the pharmacy really believe they shorted me?

Thankfully, yes they did.  I got 6 more pills.  I can do this.  Breathe.  Take the day as it comes, and accept it.  That’s all I can do.  So….I sit down and think.  I will figure out how to ramp down the steroids that is between the prescription the urgent care doctor gave me and the prescription my ear doctor gave me before.  I’m sure I’ll be fine.  It’s not quite such a severe drop between going down.  Should I be messing with my prescription?  Heck I don’t know!  But I feel better, with this regimen.  I’m too afraid to ramp down so fast.

For those of you who have been reading for a while….remember the Walmart incident?  That happened because a doctor put me on a high dose of steroids that ramped down too fast.
Now you once again have a VERY LONG POST.

and I’m too tired to read over it to fix any errors.   I’m being a very bad blogger.  I hope you will forgive me.   I just fell again today….I’m not going to write about that now!  I’ll tell all about my back/hip/leg pain after my doctor’s visit on the 6th!  I’m sorry, but I’m not up to being an editor today.  🙂   My back/hip/leg thing…just isn’t going to get better if I keep falling is it?  Of course, that’s why I’m falling!!   I can handle it…..one moment at a time.  I can handle anything for a moment, after all, isn’t that really all we know we have, this moment?

***rest in peace to my cousin Curtis Winslow.  My childhood memories are full of you.  1958 – October 1, 2014

Moving Day…kinda sorta

On By WendyIn Chronic Illness6 Comments
moving-day
We left all of this stuff behind!!                                                     found this cute clip on wanderingbohemian.blogspot.com

I wish I had been writing short little post all along, because now I really have no idea where to begin.

This has been so very, very, very hard.  Yet in many ways it has been so very liberating.  Liberating because I feel I am being unburdened by so many things that I do not need.  How did I get so much stuff?  When I met my husband I lived in a studio apartment.  Where did it all come from?  And truthfully, for just me, I had too much stuff then!  Getting rid of all of this clutter is freeing.  I keep thinking, for the past few years I have lived without even thinking about this stuff why do I need to have it around me now?  There are some sentimental things I’m having a hard time parting with, and I’m holding on to some of those.  I think I’ll have a second ‘cleansing’ later.

Then there have been so many other very hard parts.

Physically.  Physically, I just couldn’t do as much as I wanted.  As much as I felt I needed to do.  I got so sick.  All the dust and stress, and just everything caused me to have major symptoms.  My breathing.  I had the hardest time breathing on many days.  Twice while I was sorting through things I realized I was confused, once I was giddy, I got up and couldn’t walk straight.  I got out of the room and each time Stuart saw me and helped me to the couch.  Then I started coughing.  I’d cough up a lot of mucus and need my inhaler and a nebulizer treatment.  I was not getting enough oxygen.  I wasn’t wheezing yet, so I didn’t even realize it, but my lungs were filling up with mucus.   This whole situation, has really opened my eyes as to just how little I understand about my lung issues.  I’ve had to cancel many appointments with my lung doctor because of vertigo, and now my doctor is finishing her residency with Duke so I would be seeing a new doctor, so I’m going to start looking for a new doctor in Charlotte as soon as hubby’s new insurance kicks in.  I’ll post more on that when I see the new doctor, I don’t want to say more about it until I get more information.  For now I’ll say, I’m keeping a closer eye on how I’m feeling, how I’m breathing, and how it’s all going together.

The breathing difficulties made it very hard for me to help as much as I felt I needed to.  Yes, I do mean needed to, because no one else could say if my stuff was to go to the new place or not.  And we did not have the luxury of just packing it all and deciding what to keep later.  We are moving from a 2300 sq ft home to a 700 sq ft home.  Things had to be trimmed!  So I tried wearing a mask, it worked somewhat, but it made me less air flow, this made me feel like I couldn’t breathe….maybe I’m a bit claustrophobic?  Maybe a little, but I wear that mask out all the time with no problem, but I’m not exerting myself.  I guess that’s what was making it difficult, or perhaps I was just already so irritated.

Then the headaches were getting bad.  Maybe because of the breathing issues, maybe because of the stress, maybe because of all of the above….or the weather, or ……my head was / is hurting.

I was having more vertigo.

The last 5 days at the house I spent most of 4 of them in bed.  Talk about GUILT!   However, I got a lot done from the bed.  Stuart would bring me things to go through in bed.  Not sure that really helped me much physically, but mentally it helped.

I have not been doing well with my Mindfulness Based Stress Reduction studies.  I think if I had been doing them longer I would have been able to deal with this better, but nope, I didn’t deal well.  Kind of went right out of my brain.  I’d try every now and then….and then I’d just look around at my completely torn up house and think….how on earth are we going to do this?  and FREAK OUT!

Well, things got done, as much as they could.

Movers came today…..Oh that’s a story.   The relocation movers.  Couldn’t come until today, the 17th.  Are giving us a FOUR DAY WINDOW to deliver.  That means delivery could happen on the 21st!  That’s the day Stuart was supposed to start work!  Ummm…..this is the relocation company that Stuart’s company uses.  So, luckily his boss is very understanding and he is going to start work on the 28th.  Phew!

Can I just say, moving under the best of circumstances is not easy.

Downsizing like we are makes it more difficult…..even if you want to do it.

Having very little to no help makes it extremely difficult!

Having a chronic illness on top of all of that can make it pure hell.

My saving grace, as always, having a spouse who is willing to go that extra mile to make it as comfortable for me as possible.

That’s why, today is moving day….and I’m sitting in a hotel room with Max the many toed cat.   We didn’t need a freaked out cat there while the movers were doing their thing, and I didn’t need to be there with more breathing irritants and getting more stressed.   (ahhh…deeeeeep breath!!!!)

I’ve been a bit scared that this whole thing is going to make me go back a bit….meaning, I’m going to end up back having daily migraines, tinnitus, pain, vertigo…  Not being able to do much at all.  I have been doing so much better.  suddenly, I have been really scared…..

Then I thought.  That’s tomorrow.  I have no control over tomorrow.  My worry isn’t going to change it.   I can only continue to do what I know to do, and if I feel good, great, if I don’t, I’ll reevaluate.  I’ll just live in the moment.  That’s all I have.  And right now, this moment is pretty good.

Hubby should be here soon.  Max is dreaming kitty dreams.  I see kudzu taking over the fence outside my window.  It’s a normal day in “The South”.

 

Hey Doc, You are Fired!!

On By WendyIn Chronic Illness, Mental Health11 Comments

you're Fired

Small note…I started this post on Friday, April 18th.  I updated it today.  It’s a bit long, sorry.  I apologize if it is a little bit jumbled, my head is in that frame of mind right now.  Trying to get everything in, and just now knowing where to stop.  As normal, there may be grammar, typo’s and all kinds of mistakes, if it’s too much, just let me know.  But you may get a long letter back.  : )

After much toil and trouble trying to get help from my psychiatrist, it’s time to give up and move on!

Hey Doc, You’re Fired!

I wonder if firing a doctor makes them understand much, after all, they still have a job, but they don’t have me as a patient any more. If she continues to treat patients the way she has treated me, I don’t see how her new practice is going to survive!  Also, where I’m concerned, she will be told why she no longer has me as a patient, maybe it will bring some understanding.  I’m sure part of this is my issue, but some professionalism must be maintained between a doctor and patient.

From my last post you may remember that I saw my psychiatrist on Wednesday, April 9th.  (This was after a month of trying to get my medication straight and get an appointment to see her.  All of that after having side-effects from a medication that I should never have been put on.  She did not look at the medications I had been prescribed by other doctors.  If this had happened, and we had discussed this, I would not have been prescribed a medication that interacted with my other medications.)   On the 9th, we discussed my medication, and I discussed the fact that I felt the need to start an emergency plan in case I was going to hurt myself because I was having many thoughts and desires of doing just that.  I really felt this was not taken seriously, perhaps because my husband is with me most of the time, and cares for me?  I don’t know, I do know I left the office wondering why that was just brushed off.  One reason she may have thought I didn’t need more discussion on this is because I was taking precautions.  I had my husband lock away all of my medication and only dispense them as they are prescribed.  I had him looking for more clues, other than just me balled up on the floor falling into an abyss.  Yes, I was cycling, so on the good swings I was able to try to set an emergency plan in place.  But on the down swings….well, that’s a different matter all together.  However, I cannot stress enough, if you have any mental health issue and feel you may harm yourself, try very hard to make a plan that will help you.  If you want to know more about what I did…please contact me, just look at my About Page.  It may not be everything, but I found it a great help that I knew I was helping myself in some small way even when things were spiraling out of control.

During the latest visit we did make a plan for my medication, but she wanted to talk with my neurologist to make sure the medication she put me on wouldn’t interfere with any other medication she had me on.  Finally, I thought, a Great plan.  She said she should know by Friday, April 11th,  and would be in touch.   That didn’t happen.  My husband called on Friday, Monday, Tuesday, Wednesday, Thursday….and Friday (when he called on Friday the 18th he learned the office was closed for Good Friday).  Each day he only got a recording to leave a message, he never talked to a real person.  I emailed the main office on Wednesday to reiterate that my husband was trying to get in touch, and no one had called him back.  I also made sure they were aware that he is authorized to speak for me, as I cannot talk on the phone.  (This is listed in my files, he has full power of attorney for me.)

My husband also talked with my neurologist.  She said the medication would be fine.  (I’m not sure if the psychiatrist ever actually got in touch with her or not.)   Thursday, April 17th hubby and I talked and decided we would ask my neurologist or general doctor if they would write the prescription for the medication.  Preferably, my neurologist because it is a medication she often prescribes.  (I had already decided I was going to change psychiatrist  but I needed to start the new medication now, who knows when I’ll get an appointment with a new psychiatrist.)

The plan for Friday was to call the psychiatrist first, trying to reach out one more time.  Then call the other doctors mentioned, and to get in touch with my therapist, and hubby’s therapist to see if they might have recommended psychiatrist for me to change to.   However, when hubby called, (as I said earlier) the psychiatrist office was closed for Good Friday.  Yet, she still had not returned any of our calls!  (yes, I am so disappointed in this woman, you have no idea!)  He also called my general doctor, and her office was closed.  He called my neurologist, and she was in!!!  Yay!  She also called in my prescription!  (she was already calling in a prescription for me for steroids to see if we can break this cycle of the killer migraines).  I must say, most of my doctors are WONDERFUL!  I love them, and I know they care about me.

These are just a few of the reasons that I’m firing my psychiatrist, but there is something else that really bothers me about the whole thing.

When I first saw this doctor I had a very good first visit.  It felt right.  Then when I returned for my second visit she seemed to have forgotten everything we talked about.  No, I don’t expect my doctors to remember everything from every visit, but I do expect them to look at my file and be a bit up to date when they walk in the room.  She met me by telling me that she was leaving the practice I was seeing her at, when I was referred to her I was told she was not taking new patients, but since she worked so well with my therapist  she would accept me.  I was conflicted about this because my therapist is with that practice and I like for my doctor and therapist to have a good working relationship.  But I felt very good about the first visit so I decided to follow her to her new practice.  (and when I say new, I mean, they were just starting it, so it’s a big deal for the doctor’s involved.  I realize this has to be a lot for her to deal with, but it shouldn’t be at the neglect of her patients).

Now that I think back on this, it bothers me.  First, it was questioned if she was taking new patients, and she decided to take me on because she likes my therapist so much….ect.   I was thrilled at the time.  Now I think, she should never have taken me on as a new patient when she knew she was leaving that practice.  She had to know, my first and second appointments were only 2 weeks apart.

I know this post is getting a bit long, but I feel I would like to say some good things too.  When I first saw this psychiatrist, I felt validated for the first time in years.  She understood how I couldn’t just exercise…ect.  She seemed to really understand my chronic illness and was willing to work with me.  We discussed that at some points I may have to cancel my appointments on short notice, she understood and set me up special appointments on her planning days, so if I couldn’t come, she wasn’t losing any money.  This plan was still in effect at her new office.  I only had to cancel at her new office ONCE, so I don’t think this should have been an issue; but I don’t really know.  There are 2 other big things that bothered me when she moved.  I have severe asthma.  She put an aromatherapy thing in her office, I could not breathe in there.  I put on my mask and got way to hot and couldn’t stop coughing.  We had to move to the conference room.  I was very uncomfortable there.  We were even interrupted by her husband and that made me feel very odd.  I know it is too much to ask, but after her extreme understanding, or so it seemed, at our first meeting, I kind of expected the smelly thing to be gone from her office when I returned.  I guess she doesn’t have any other patients with scent issues.  One huge thing, as you all know, I have a big problem hearing. this doctor talks very fast.  I ask her often to slow down.  She will apologize and then continue to speak at the same speed.  This is the reason I have to have my husband in my sessions.  I would prefer not to have him in there.  It takes more time, and I feel I’m just spending time going back and forth trying to understand things.

Now, we wait for a bit to see if she will actually return my husband’s calls next week.  If she does, he will explain in detail why we will no longer be in need of her services.  If she doesn’t, I will be writing her a letter.  At this time I’m not sure what other actions I may take.  I do feel doctors should be more responsible for how they treat their patients.  They are in charge of a person’s health.  A mental health provider could the that cog in a person’s life that changes a life forever….or puts it in a delicate balance of life and death.  Am I being overly dramatic here?  I don’t think so.  If I believe my doctor cares and is trying their best to help me, I feel better.  If they ignore me when I have made it clear that I am in a very tenuous state, I feel less like a human.  This is a huge responsibility.

If she calls, we will simply discharge her.  I can understand that she may be way over her head in the new office, that she may have hired the wrong front staff people….ect.  I feel compassion for her about all of this.  There may be extreme circumstances in her own life.  In a business, especially one of this magnitude, extenuating circumstances should have been relayed to the patient and taken care of by another doctor on call.  But she doesn’t even call???  No one called.

So now you know my whole story.

On closing….my therapist got in touch and recommended a new psychiatrist.  We have been in touch, and will see where we are going from here.  I’ll keep you updated on that.

Always remember, we need to be an advocate for ourselves!

If a doctor doesn’t treat you with respect, or if you are just uncomfortable in their care, and you have any way possible, change doctors!  I know some people just can’t do this as easily as I can.  I grew up in a very rural area, I had two choices for a general doctor.  No choices for specialist.  The nearest doctors of choice were over an hour a way.  (this may have been a major reason I was not diagnosed with Bipolar I Disorder as early as I might have been.)

Yes, I may have a mental illness, and recently I may have been very depressed because of my medication has not been working properly, but I am a human being.  Oh a better note, I am feeling much better (I know I need to get my medication straight because with Bipolar I Disorder I might feel fine one day and not so much the next).   Doctors still need to take patients seriously.

Yet, I realize that a lot of people will think, “She has a mental illness, is admittedly not stable, she is probably exaggerating about things.”  Or something like that.  I’m lucky I have someone (my husband) who can also help be an advocate for me and explain this is not “all in my head”.   But what if I didn’t?  What if I didn’t have the ability to just change psychiatric doctors?

There needs to be much progress made to help people who need mental health care.  (or health care in general) If they can’t afford it, they are often put on a LONG waiting list to see someone that the state provides.  They have no choice in doctors.  They are often lost in the system.  When you are having mental health issues, trying to navigate the system to be seen at all is extremely hard.  (Yes, I am speaking from experience).   Things need to change.  How can we bring about a change?

I’ve thought and thought on this issue, and I just can’t see how to make things better in this country.  Are the mentally ill meant to live a life of less?

Mental Health care (and general health care) in this country is great….if you can afford it!

Thoughts?  Ideas?  I’d love to hear them.

The Bipolar Cocktail – when the mixture isn’t right…

On By WendyIn Bipolar35 Comments

Medication_cocktail_by_LaChixMany illnesses are treated with a cocktail of medications, Bipolar type 1 is not different.  For me, I must have a mood stabilizer, an antidepressant, an anxiolytic (anti-anxiety drug), and….I can’t remember if there is anything else.  I think that’s it.  Right now the mood stabilizer is working.  The antidepressant isn’t working, and the anxiolytic is trying hard to work but I have a lot of reason to be anxious.  (that’s what my therapist told me on Thursday anyway).   Of course, you could say I have a lot to be depressed about too, but I don’t normally let depression take over my life.  I’m fighting hard to keep telling myself, “This will get better.”, but it has been a bit overwhelming lately.

The tears, so many tears have fallen.  The words, “I’m sorry.” have passed my lips so many times I’ve begun to wonder if I can finish a conversation without saying it.  I’ve been told by professionals that I don’t “wallow”.  Oh if they could see me some nights, they might just change their minds.

Recently I completely lost control.  In a complete panic! I needed to leave.  I needed to get away from my husband before I hurt him any longer.  I know I’ve become such a burden, I’m not a fun person, I’m worthless, and useless.  I wish this wonderful, caring man had never met me.

How could I leave?  I can’t drive.  Where would I go?  I have no money.  What could I do?  The only answer.   Take the dark lady’s hand, I hear her promises to make it all better.  To help my husband.  To end the pain for both of us.  I reach out….and suddenly I stop!  NO!  This is my illness talking!  It will get better.  My husband loves me, and if I leave with her, he would be devastated.  I can’t hurt him.  “NO! my  lady I will not leave with you.  I’m stronger than you!” … at least for now.

I knew my resolve was weak.  I knew I couldn’t trust myself.  I grabbed my computer.  I searched and searched….I needed an inpatient hospital.  Somewhere I could go for just a little while.  Somewhere I could be made to not listen to the dark lady beckoning to me with empty promises.  I found a listing, I hit on it…..Site Not Found….What???  I went to the next place on the list…it wasn’t an inpatient facility…the next, same thing….again…again!  I threw my computer!

I was so livid!  And so…..I don’t know….I really don’t remember what happened immediately after that.   I know I ended up getting in the bath, (for those who regularly read my blog you will know how odd this is for me, I’ve become quite phobic of the bath due to my vertigo, but in the bath I was.) and my husband joined me.  He held me, and we just laid back in the water.  I talked, he could only listen.  (I can’t wear my cochlear implants in the tub, so even if he talked I wouldn’t have known.)  I cried, he held on tighter.  I told him everything.  He knew most of it already.  He did witness it.   When we got out of the bath, and readied for bed, I gathered all my medications and gave them to him.  I took out 3 pills that I might need during the night, knowing that even if I took the 3 together I would not cause myself harm.  I told him to lock them away, until I was better.  Only giving me the medications as I needed them.   (this happened a few days ago)

My cocktail will be remixed on Wednesday.  It will take a while to know if this mixture is working.  Until then, I will be cautious.  I’m still crying a lot.  The words “I’m sorry” are continuously spewing from my mouth.  I not only feel sad, angry, lost and riddled with panic….I feel sick.  My body feels as if it is fighting off an invader.  I keep running a low-grade fever, on and off.  I am hot….I am cold.  My head, throat, all of me hurts.   I had one of the worst asthma attacks I’ve had….ever…yesterday.  It scared me….suffocation is terrifying.   Once I knew my rescue inhaler was not going to work, we rushed to get the nebulizer up and running.  Luckily, I began to feel relief very quickly.  A trip to the ER was narrowly avoided.

Yes, I have an emergency plan in place now for my deepest levels of depression.  Of course, I have my husband watching my behavior.  I have all my medications that could harm me locked away to be given out only at specified times.  We have the address and phone number of an emergency psychiatric hospital.   At times I am thinking clearly.  Other times I feel so engulfed by the depths of depression I cannot imagine a way out, it feels as if I’ve stepped in a tar pit and it is constantly trying to pull me under.  I have to keep my mantra in my head….”I know it will get better.”   I’ve had problems with my medications before, I KNOW THIS WILL GET BETTER!

A New Year….what will it bring?

On By WendyIn Chronic Illness9 Comments

“Change is inevitable, growth is intentional.”    -Viktor Frankl

In the beginning of 2013 I was so sick I didn’t even write a New Year’s post.  I was so depressed, and so very, very ill.  (yes, I know this one is a few days late, but it’s still the beginning of the year, right)

So what will the 2014 bring?  I’m not sure, but I know it will be a change.

Nothing is ever permanent.  I may feel I’m always sick and feel horrible, but if I look at every day, every moment, that isn’t true.  It’s not a constant.  Life is not constant.  I want to remember this, and work at being mindful about each moment.

I don’t want to make resolutions, because, let’s face it, very few resolutions are actually carried through.  But there are a few things I want to strive for….if I don’t get there, it’s OK.  Things change.

  • As I’ve already said, I want to be more mindful about each moment.  If I’m doing something I want to really pay attention to what I’m doing.  I do not want to multi-task.  I want to be present in the moment, each moment.
  • I’m trying to eat much less meat.  I know this is going to be a challenge because of my food limitations, but I feel the need to do this.  One day recently I realized if I had to kill the animals we were eating I wouldn’t eat them.  I’ve felt this way for a long time, but I didn’t really take it to heart.  But now, I simply feel I need to do this…so I’m going to try.  I’m taking it slow, and I’m not going to go crazy if I happen to have a bit of meat…just one moment at a time.  (I am still eating eggs…trying to only get pasture raised, and I’m eating some dairy…trying to only eat dairy from a local farm where I know how the cows are treated.)
  • I want to meditate more…I’d like to do this much more regularly than I have been.  I have found that this really helps me when I’m having a vertigo or asthma attack.  I can calm myself and that makes things much easier to get through.  However, I’ve found it is hard for me to meditate for long times, at least for now…so I will start off slowly (if I strive for a couple of minutes, then I’m sure I can succeed)  and work my way up..
  • I want to become happier with my appearance as I am now.  I’ve been so obsessed about losing weight, it has caused me to have very negative feeling about myself.  Yes, I haven’t been able to lose weight because of mitigating circumstances (like not being able to exercise, and taking meds that cause weight gain), but I blamed myself.  I feel if I feel better about myself the size I am I will have accomplished a lot!  I also feel that until I feel more self-confidence about my appearance, it will make it harder for me to lose weight.  That may sound counter intuitive, but when I’m unhappy with my body I get discouraged, and think why bother.  Discouragement, breads self-deprecation for me.
  • I’d like to blog more.  This past year was very hard, I can think of a few reasons it was harder than normal, and hopefully these things will be changing soon. (for example…Stuart getting a job, me getting the asthma under control….)  I don’t like to always sound like someone who is just full of heartache when I blog, so I didn’t blog as much.  I have found that I need to share more with others, the good, the bad, and the ugly.  Someone out there may be feeling the same way.
  • And I’d like to challenge myself more.  I know I will have to do this when Stuart goes to work out of the home, but I think it will be good for me.  Sometimes, I feel I rely on him too much.  It’s much easier to ask him for help with something than to risk doing it myself.  My mantra on this must be….”slow, take it slow.”

There are many more things I could add to this, but as I said, this isn’t a list of resolutions, just some plans that may change as the moment changes.

note: for some reason WordPress would not let me insert a picture in this post…sorry for just words, words and more words.

Things on my mind….

On By WendyIn Chronic Illness, Cochlear Implant4 Comments
Got Ewe On My Mind by LoopyDave on DeviantArt.com

Please note, this post is just random thoughts I’m having and want to get out of my head for a bit.

I’ve had a lot of time to think recently.  I haven’t been able to type a lot because I hurt my shoulder.  I fell, again.  This time I was going to the bathroom in the middle of the night.  I was not balancing very well, but that’s normal.  I started to fall right at the toilet and fell into the wall.  My shoulder took most of the weight.  So I’ve tried to just do less with it, but it got worse.  So I had to do much, much less.  Now it seems to be getting better.

So if I haven’t been commenting on your blogs, it doesn’t mean I haven’t been reading, I just haven’t been typing much.  I read them in my email on my phone, it’s hard to comment on my phone, and that would hurt my arm just as much, I think.  So in the wee hours of the morning when I’m up coughing, I’m probably reading your blog, and thinking of You.

Stuart has started school.  I’m proud of him.  I’m also scared and stressed out.  I don’t want to live poor again.  Not that we are rich by any means, but I used to live paycheck to paycheck and often ran out of money.  I remember many times living on peanut butter and jelly sandwiches for weeks to get by, I’d also accept dates from guys I knew I didn’t want to date just so I would get a good meal.  Stuart has never wanted for anything really.  So I’m much more stressed about it than he is.  In my heart I know things will work out.  But, in my gut, I’m nervous.

I will be going to Duke’s Asthma, Allergy, and Airway clinic on Friday.  Please everyone think about me and send good thoughts that they will be able to stop this dang cough.  I’ve been coughing every day since mid October…yes that’s last year!

On September 3rd, my hubby and I will be celebrating our 9th anniversary.  We can’t really do anything but we’ll be celebrating that we’ve been through so much in our 9 years of marriage and are still madly in love.

The second week of September I go in for Pre-Op for my second cochlear implant surgery.

The surgery is on September 25th.  I don’t know why, but I’m more nervous this time than I was the last time.  Before I was more excited, now, I’m a bit scared.  I shouldn’t have, but I expected a lot from the first CI, so this time I’m not expecting anything.  Which is silly, that’s what I have now.  No hearing in that ear.  Things have to be better when I can hear out of two ears.

Well, I have much more on my mind but I don’t have the energy to write more right now.  And you are probably tired of reading my tirade.

What’s on your mind today?

Customer Service and Health Care

On By WendyIn Chronic Illness, Health Care7 Comments
Doctor's Waiting Room, by CarolynYM at DeviantArt.
Doctor’s Waiting Room, by CarolynYM at DeviantArt.

Why do a lot of doctors and/or their staff think they are doing patients a favor by seeing them?  We are their customers, we are paying them, there are plenty of other doctors in the same field; we do not have just one choice!  (I do recognize that some in rural areas do often have just one choice, I grew up in an area like that.  We had to drive 2 hours for me to see an orthopedist, but still, they need to treat us with respect.)

I am so tired of going to a doctor’s office only to wait way past my appointment time, then I’m rushed through my appointment, and when I leave I feel like I wasn’t seen as a person, I was seen as dollar signs.

I have felt this way too many times.  Often, I only feel this way with the doctor’s staff.  I’ll love the doctor, but their staff is rude and inconsiderate.

I can give you many examples of this, but I will just give you 2 that have happened to me recently.  I wish I could say these were isolated events, but unfortunately they aren’t.

Recently I was looking for a new gynecologist.  The last time I went to my old GYN I had trouble with billing (during my annual visit she found something, I had to go to her office to give me a paper on it, I was subsequently sent a bill for an office visit…What?? Even if I was to be charged this, why was I not told in the office?), and feeling like she wasn’t listening to me or answering my questions.  But, this is a different story.  I asked my migraine specialist if she had a recommendation for a GYN who would work with my hormones to possibly help with my migraines, and who knows more about menopause than delivering babies.  She recommended someone who sounded perfect.  My husband made an appointment, unfortunately I was not feeling well the day before and knew I would not feel well enough the next day.  He canceled before the 24 hour required notification, and rescheduled.  The next time I woke up with a vicious migraine, and soon had an asthma attack.  No way I could make it.  Stuart called and explained, they said they understood and would not charge the late cancellation fee.  He decided to wait to make the appointment again.  In a few days he called to make an appointment, and set one up.  The person making the appointment said that they realize his wife has health problems but she really needs to make sure and keep this appointment.  Stuart wasn’t happy with this, “You can’t say you understand and then follow up with something like that.”……Then he received a call from this doctor’s office saying that the doctor would not see me.  He told Stuart that we had canceled 3 times with less than 24 hours notice.  Yes, my husband was livid.  He got off of the phone and told me about it.  He then called the office back and asked to speak to the office manager.  First, he told the person he wasn’t upset with him personally, but he was upset, so please don’t take what he was going to say personally.  (he is so thoughtful, I would have been upset with him, the man is the office manager, he needs to take care of these things.)  Stuart then complained about the way he was spoken to, and proceeded to explain that they lied.  He explained what was said, and what the truth was, and also said it wouldn’t matter now because I would not go to a doctor who allowed their staff to do such things.

Unfortunately for me, she was the only gynecologist I have found who is just a GYN and not an obstetrician too.  But I did find one who practices Integrative Medicine, and works with balancing hormones.  I will be seeing her in 2 weeks.  Let’s hope things go better at this office.

The other incident happened at my General Practitioners office.  I went to see my doctor about my asthma, I was still having a VERY hard time.  I walked in the office (with the aid of my spiffy walker) and the perfume smell hit me in the face!  I started to cough more and wheeze.  I was having a very hard time breathing.  I asked the front desk if there was somewhere else I could wait because of my asthma….I explained I couldn’t breathe with all the perfume in the waiting room…and it was obvious!  She got all snippy and said no.  So I said I would have to leave. Then she said, “well only if a room is empty” and she went to check. I felt like she took forever.  I could tell I was making people in the waiting room uncomfortable.  I had to use my inhaler 5 times just so I could catch my breath.  Then she comes out and gets me.  I was a mess, and ended up blacking out in the exam room, luckily my doctor and Stuart saw how pale I was getting and got me on the table lying down and helped me before I hit the floor.  My doctor was not happy.  (I must say that since this incident the staff there have been much more supportive.  I think my doctor said something to the front desk. Plus, I think we have been lucky to talk to staff who are much more likely to help.)  Now when I go there I wait in the hall until they can take me straight back.  Luckily, my doctor is in a building that has a huge hallway.

Do others notice that you get poor customer service from the health care industry?

Yes, I have had some awesome care, and awesome customer service.  I have some nurses and doctors that make me feel like family.  But, it amazes me how many times I’ve gone to a doctor and felt like I wasn’t wanted there….that I was a bother.  (once I actually had a doctor, who I was referred to, ask me why I was there???  Ummm, because my doctor told me I needed to come see you.  This was after she left me in the room with the door open and talked to a friend in the hall for half an hour.  She left a lasting impression on me, and not a good one.  I’m often very nervous now about going to a specialist now, thinking they may wonder….why am I there?  I’ve never been so embarrassed or pissed off (well I’ve probably been that pissed off, but boy was I ticked, and for some odd reason, my feelings were really hurt.)

Please note, I do understand that the staff at many doctor’s offices deal with a lot of strife, but every patient is different and should be treated that way.  I’ve worked in customer service, and I would be ashamed if I treated anyone the way I have been treated at some health care provider’s offices.