Gratitudes 3 – A Pretty Darn Good Week!

by w. holcombe
by w. holcombe

Things haven’t been perfect this week.  I did have a night filled with cluster headaches.  But I got through it, and since then I’ve been feeling, well, pretty darn good.  Until I got this little virus, but I already wrote about that, and I’m grateful that it will run it’s course and I’ll be done with it!  Plus I’m very Grateful that it really hasn’t been that bad, a couple of icky days, but that’s about it.

I am so very GRATEFUL that I found something that is helping me with my tummy issues!  I found a book that addresses the food issues that I have, but I plan to write a whole post about this, it’s so exciting! And I think it could help others with dietary issues.

I am GRATEFUL:

  • that I have a new psychiatrist!  She is so professional.  I’ve only seen her once, but she took a very detailed patient history, discussed all my medications in detail, discussed my concerns, and our future plans.  I was very impressed.  After the last fiasco with my previous doctor, it is such a relief to find a doctor who is not only professional but enjoys her job.
  • that I have been on more regular sleep schedule.  This is something I haven’t had for a very long time.
  • I am waking up with more energy.  Of course, this is probably because I am on a more regular sleep schedule, but it sure is nice.
  • I’ve been able to go down stairs every day this week. Most people probably don’t know just how disabled I have been, but tackling the stairs have been a huge task for a long time.  Most weeks I’ve been lucky if I’ve made it downstairs one or two days.  So making it down stairs every day for a week, that is a great accomplishment!
  • I have gotten out of the house many times this week!  Not only have I made it downstairs every day, but many days I’ve gone out.  I went to the grocery store….a HUGE accomplishment!  I went for a ride with the top off of the car!  I went to the Thrift store and got a new pair of pants.  I went and looked at glasses.  (I have an eye doctor’s appointment tomorrow, and will need new glasses.)  I even went out to eat, this is hard because of all the noise.  I’m also proud I went out to eat and stayed true to my diet, I didn’t eat anything that would make my tummy unhappy.
  • yoga pose 1yoga pose 2I exercised a little this week….a very, very little…but I did something!  Not only did I do a lot more in general, and you can call that a lot more exercise…I know my body is!  I did a few yoga poses almost every morning.  Just a few.  I’m trying to learn to balance more with my eyes instead of relying on my ears so much.  So I’m doing some of the standing yoga poses while focusing on a focal point.  Maybe it will help.   By going out an doing more I’m also working on increasing my stamina.
  • I didn’t let a virus ruin my week.  I was having a really great week, then I caught a virus and suddenly I felt crappy.  I thought, am I going to start feeling really bad again?  Then I caught myself….Stop thinking like that.  I can’t predict the future.  And what has been happening has been great, but it doesn’t mean it will continue.  I  will live in this moment.  and I’ll enjoy it.  If it’s a bad moment, I know it’s a moment.  It’s my moment.  And it’s OK.  (A note to Laurie at HibernationNow….Yes, I did over do it…You were right!  so I’m very tired today…but it was worth it, yesterday I had a a very fun day!)
  • I realized that even having a virus I still don’t feel as bad as I have felt.  No I don’t want to live in the past, but it was a bit of an eye opener when I realized I was lying here sick and I didn’t feel as bad as I have for a lot of the time this past year….heck the past couple of years.
  • My head hasn’t hurt much at all!  As I mentioned above, I had a night of cluster headaches, but since then….my head has been so good to me.  There’s a couple of reasons I think this may be, but I’m just grateful that it has happened!  I’m sure I’ll have headaches in the future, but to have the relief I feel now….so GRATEFUL.
  • I made my lunch today all by myself.  I cut up my own chicken today, and warmed up my own lunch.  Because of my balance issues and sudden vertigo I haven’t trusted myself to use a knife in a long time, at least without supervision.  Today I made my lunch with Stuart upstairs.
  • To hear my husband say, “It’s so nice to be able to do things with you.”   Remembering to be in this moment…..
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When the Chronically Ill get Sick

feeling sick, by w. holcombe
feeling sick, by w. holcombe

At the end of a GREAT week I’m sick.

Ugh, I have a virus.  Hubby’s had it all week.  He’s been very tired all week, running to the bathroom often, and just not feeling well.  It hasn’t been enough to stop him from doing what he’s needed to do, but I think he would have rather napped a lot.

Last night, it started to hit me.  I thought I’d just had a banana that wasn’t ripe enough.  Umm, Let me explain, I have fructose malabsorption, bananas that aren’t ripe have more fructose than those that are ripe.  By ripe, I mean with a LOT of spots, most Americans do not eat bananas that are really ripe.  So I need to eat really ripe bananas, the banana I ate last night only had a couple of spots, when I had the first bite I thought, ummm, not quite ripe enough, but I ate it any way.  My tummy bloated, more than it normally would just from a little banana, and it stayed bloated all night.  In a couple of hours I started getting really hot, REALLY HOT.  I got up and ran cold water over my hands and splashed it on my face. Suddenly I felt like I was going to pass out, Stuart had to help me back to bed.  I quickly went to sleep.

This morning I woke to the feeling of having to go to the bathroom.  Not a normal thing, but didn’t think much of it.  I was happy I didn’t have a headache…again!  That’s 4 days in a row now!!  However, I noticed that I was still bloated.  Not a good thing….wasn’t happy about that, but didn’t think much of it.  Was just sad  because I’ve been on an elimination diet and I’ve lost 3 1/2 inches from my tummy in the past 5 days, but I thought, this was just temporary.  Perhaps I was reacting more to the banana because I had been avoiding all foods that I had been reacting to?  I got dressed, even did a tiny bit of exercise…..just a few yoga poses, I’m trying to work on my balance a little since I’ve been feeling better.  But I got a little light-headed, and laid down for a bit.  Got my head together and went downstairs.  Had my morning smoothie and played with the cat.

Suddenly I had to RUN to the bathroom.  My stomach HURTS.  I feel weak, tired, and overall just yucky.  Now I have a headache too.  I won’t be able to do things.  I will be on the couch for the day.  Hubby didn’t feel good for about a week, I hope I don’t feel like this for a week.

So Hubby’s little virus is hitting me hard.

I have found that this is often what happens when someone who is already chronically ill gets a little virus.  We don’t have the little symptoms of a normally well person, our symptoms are much more profound.  At least I’ve found that to be my personal case, and I’ve heard it from others….how about you?  Do you find that a little virus, even a “little” cold hits you harder than the average person?

Now I think I’ll take a nap.

Me and my blog…..it just is.

hearts gray scale
w. holcombe’s heART

After more thought, and feeling much love, I realized hearing the “criticisms” about my blog, and/or me, hit home because I was feeling critical about myself.  I don’t think of myself as a negative person, but I was feeling it, and didn’t even realize it.  My life has changed drastically over the last 4 or 5 years, and the one thing I felt I held on to was my ability to see the best of the situation.  I never asked “Why me?”  I said, “Why not me?”  This is very important to me.  This is a part of my very essence.   I was afraid I was losing me.

Let’s face it, the past couple of years have been very challenging for this household.  Yes, we’ve met these challenges head on, but they just kept coming…..and coming…and coming……..often the solutions have not been as easily forthcoming.

It has been wearing me down.  Much more than I realized.  Not one to dwell on things, I normally allow myself to feel the emotions that go along with a challenge then I make a plan, and deal with it.  “How do I handle this?”  “What can I do?”  “What’s the best way….????”   Unfortunately, many of the challenges I’ve had to face recently have been completely out of my control, or the resolution is not easily obtained.

  • My husband lost his job…..what can I do?  I asked myself that often.  I felt guilty that I couldn’t work.  I tried to get disability and was denied.  (yes I’m appealing, but it’s taking a long time.) Totally, out of my control.  No easy fix.
  • Sandy died.  My best friend.  My constant companion.  I felt lost.  In many ways I still do. I felt guilty.  I felt I let her down.  I know that’s not the case.  The grief has taken a lot out of me.  Out of my control.  No easy fix.
  • I’ve had added health issues.  Out of my control.  No easy fix.
  • My health issues have gotten worse.  Out of my control.  No easy fix.
  • My father was diagnosed with cancer.  Out of my control.
  • ect…ect…ect…….

Yep, I was having a hard time being me.  I’d look in the mirror and think, where are you?  I know you are in there somewhere….come out!   I was ready to hide.  After everything, I felt broken.  And I could not admit that, not even to myself.

I talked on here about my fears, my pain, everything.  I’ve been honest.  However, inside I could not wrap my head around the fact that I was really and truly scared that things would never get better.  No matter how many times I might have said it, and wanted to believe things would get better, the fact that they may not was driving me crazy.  The thought that things would not get any better…..that was just not acceptable.

Then I realized, I’m looking at this all wrong!  I’m thinking too much in the future.  I don’t know what the future may hold.  I have been freaking out over what has been happening, and I have been building up these stories in my mind about how my future might unfold.  These stories have not been great.  This is not a healthy way of thinking!   I cannot live in the future, no more than I can live in the past.  The only place I can live is in the present.  Yes, that sounds very Zen.  Yes, I’ve been reading a lot about this, but it makes sense.  If I’m constantly thinking about what tomorrow might bring, good or bad, I’m going to miss out on today.  That doesn’t mean I can’t make plans, but it does mean I’m not a slave to them and I’m not going to get all bent out of shape if something happens to change them.  It also means I’m not constantly looking back thinking, “I just want my old life back.”  that’s not going to happen, I’ve known that for a long time.  Focusing on the present gives me the opportunity to enjoy my life as it is, without disappointment about dreams that didn’t happen, or romanticizing about a past that I can’t have anymore.

In short, my outlook is changing.   Luckily, so are things around me.  Would my outlook be changing if things were continuing to be spiraling downward?  Yes, I think it would.  I think it has been, I just haven’t been writing about it here as much as I probably should have been.  It’s a work in progress, or to put it more correctly, I’m a work in progress.  I always will be.  So will this blog.

I want to share with my readers, my friends, this side of me.  It is time to share more of the side that is brave, positive, compassionate, and thankful!

Yes, I will continue to come here and speak open and honestly about everything – all of it!  I can’t help it, it’s who I am.  If you would have suggested that I close the blog, I would have turned it private and continued to write, just for me.  This stuff has to come out somewhere!  However, I want you to see how I am handling the rough patches,  how grateful I am for all the little things in my life, and how much I really do enjoy my life….”ants” and all.   But there will be times when I don’t handle things well, and you will continue to hear about that too.  It’s all part of living with chronic illnesses!

I’ve decided to challenge myself a bit.  Each week I plan to write a post called Attitude of Gratitude.  These posts will include things I’m grateful for that week.  These posts may include pictures, drawings, stories, words…..or some times it may just be one word….who knows.   I want to make sure I never let a week go by that I don’t think about things for which I’m grateful.  I try to do this every day, but we all know some days we just get a bit overwhelmed.

You are welcome to join me in this challenge.  We can make it an official challenge if people are interested.   I’m going to do it, for me, and hopefully to inspire others with chronic illnesses to look around and notice the little things that they can still be grateful for.

Thank you all for taking my Poll!  It was an overwhelming landslide that I should continue to write as I do.   I promise I will continue to write as open and honest as always.  I will continue to show the bad and the ugly sides of my illnesses, but I want to even it out and show the more positive sides too.  Yes, there really are some!

I’m so very grateful to have such wonderful friends!  (many who I have never met in person)

The comments and emails I received after my last post amazed me!  Thank you all so very much!

Blogging Brings out the Best of Me!

The prompt from BlogHer today is “Does blogging bring out your best or worst self?”  This was an easy one for me to answer….Blogging definitely brings out the Best of Me!

The Best of Me! photo taken Aug.2010
The Best of Me!
photo taken Aug.2010

As any long time reader of my blog knows, I tell all the details of my illnesses, I don’t sugar coat it, but blogging helps me put it all in perspective.  The people I’ve met through my blog encourage me, support me, and have made me want to be a better person.  A better advocate for those with the same illnesses.  A person who doesn’t give up, one who always strives to make life better….even if there is no way to make an illness better.

When I feel down about things, I tell about it here,  but by telling it here makes me want to feel better about things.  I don’t like it when I feel I’m not handling things well.  A friend says that she will “Fake it until she can Make it.”, meaning she will Fake feeling good until she really starts feeling better.  We both realized that when we catch ourselves slipping into that dark, sad state, if we try to keep our thoughts positive, we will soon feel more positive.  No, it doesn’t always work.  But it works enough that I keep doing it, and have noticed a big difference.  (I must note here, I do have a mental illness, Bipolar I, therefore sometimes it doesn’t matter how much positive thinking I may do, nothing can help if my medication isn’t working.)

Blogging makes me stretch myself.  I think about things I may not normally consider.  I dare to write about things I may not have even talked about before.  Why?  Because I know there are others out there who are going through the same type of things I am, by telling my story, in detail, I might reach someone who really needs to know they are not alone.

Having multiple chronic illnesses has reduced my self-esteem immensely.  Through blogging, I now feel I have something to offer, my experiences, and I have found I can write pretty well.  No, I’m not the greatest writer, and the way I write may not appeal to everyone, but some people really find my writing interesting and easy to read.  I’m thrilled to learn this and hope I can continue to reach those who may benefit from what I’m writing about.

Blogging makes me accountable, it makes me follow through on what I start….most of the time…if I tell my readers I’m trying something, I do it!

One day I decided to start a blog, an on-line journal if you will, to keep up with everything I was going though…..then one day someone took the time to email me about what I had written.  She told me how alone she had been feeling, and how my blog had helped her.  After that day, each time I write I think about how my words may reach someone who needs to hear just what I’ve written….Yes, blogging brings out the Best of ME!

A New Year….what will it bring?

“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.

A little update

I must apologize for being away so long  I feel like I’ve just been saying the same thing for so long.  I don’t feel good….blah, blah, blah.

Remember in my last post I mentioned having a sore throat?  Well I got Thrush, a yeast infection in your mouth and throat.  Thrush is often caused by a lowered immune system, and one often gets it when you have been on antibiotics and/or steroids a lot.  You may also remember that I mentioned…at least I believe I said it on here, that I wasn’t happy by how often I had been on both antibiotics and steroids since I’ve been in Tucson.  So…Thrush.  Not fun.  First it hurt a lot, was very raw and even looked like it was bleeding, then it turned white.  I had white spots all over my mouth, tongue and the back of my throat.  I decided to treat it more naturally instead of more medication.  I’m taking acidophiles, eating yogurt, and gargling with diluted hydrogen peroxide.  (this was the recommendation on the Mayo Clinic site).  It gets much better then it seems to get a bit worse again (however, it is much, much better than it was in the beginning), I finally put the connection between how my thrush behaved and how much I had to use my nebulizer….duh, it is a steroid too.  So now when I need to use the nebulizer I rinse my mouth well afterward, and gargle with the dilution of water and hydrogen peroxide.  I think this is going to work!!

My migraines have been much more present.  I’m also having much more vertigo.  I think most of it is Migraine Associated Vertigo (MAV).  When one has vertigo with Meniere’s it is rotational.  Lately I’ve been having vertigo that goes in all kind of directions.  Yesterday it was going down….well it’s hard to explain…the room kept sliding down and then it was if it went behind me and would come back around and slide down again.  Oh I was so sick…but I didn’t throw up…yay.  I did have a lot of acid reflux and burping…and running to the bathroom, which is very hard when you can’t walk alone, and my walker doesn’t fit through the bathroom door.  (thank you Stuart, you are the best).  With everything that has been happening, all I want to do is sleep.  One day I slept 18 hours…it may have been more I’m not sure, I’d wake up when I had to go to the bathroom, and when I was hungry…and that was all.  Many days I’m sleeping at least 15 hours.  I sleep about 12 hours a night (but I do wake up a lot), and take at least 2 naps.  It’s crazy!  I’m just falling asleep all the time.

I got a call from the doctor with lab results from my urine….they sent it off to a more advanced lab to see about an infection.  It said I didn’t have an infection.  So why did it hurt so very bad?  And yesterday it started hurting, just a little, again.  The doctor suggested I go to a urologist if the pain continues or comes back….I really don’t want to do that in Tucson.  We’ll be leaving in less than 3 weeks.  I think it will wait until we get home.  I’m still passing urine just fine and they found nothing abnormal in it…it’s just painful.  Yep, it will wait until I can see my doctors.

I was able to go to my niece’s birthday party on Saturday.  I was so excited.  But it was soooo hard.  It was in a very noisy place, so I started having a sound headache almost immediately.  I couldn’t understand what was being said.  I don’t think my niece has ever  been told about my hearing loss, but when I told her I couldn’t hear well in there she would motion for me to do things she wanted.  For example, she wanted me to play one of the games, she gave me a token and pointed to where it went in, then pointed to the button I was to push for the game.  It made my heart swell that she was so understanding of my needs.  It also breaks my heart when I have to say goodbye to her, every time she will start to cry…but I told her that we were not leaving for long, I’d see her again soon.  I hope I can.  Her parents aren’t very accommodating.

Let me rewind a little bit…the day before the party Stuart and I went to the mall to get our niece a gift from the Disney Store (she loves the princesses).  We didn’t walk around much, but my hips and lower back were in so much pain before we left, it was horrible.  It’s really hard to walk much when you have bad hips…and I haven’t seen my massage therapist in a long time.  So it was hard for me to stand much at the party.  I was happy I was able to go and do a little with our niece, but sad because I couldn’t do as much as I would have liked.

Each night before i go to sleep I think of a post I want to write, then the next day I often just can’t.  My migraines are so severe lately that I can’t stand to get on the computer…I can’t stand any light.  And of course when I have vertigo, there is no looking at the words on a computer screen…or anywhere else for that matter.  I hope to get many of those posts written soon…..here’s a preview….

  • Photos I haven’t been able to post.
  • Chronic Illness and Personal Hygiene
  • More about my other chronic illnesses…..

see you soon!

“Ow! Ow! Ow!”

I was awakened, after being asleep less than 2 hours, by hearing the words: “Ow!, Ow!. Ow!”.  Imagine my surprise when I realized the words were coming out of my own mouth.  Suddenly I realized just how much pain I was in.  My head was at an odd angle and my neck was screaming with pain, my head was throbbing, and my stomach and bladder were causing extreme discomfort.  As I hobbled to the bathroom I found the words, “Ow!….” continuing to come from my mouth.   (Funny thing, I can’t really hear me say it, but when I woke up it really did sound as if the words were coming from outside my body….strange how deafness works sometimes.)

I stretched my neck and put ice on it and it felt much better, my head was also starting to ease some.  The pain in my bladder and stomach were a different story.  My stomach literally felt like it was being eaten from the inside out.  Over production of acid is not a pleasant feeling.  I tried to eat a little something to calm the pain down, I took extra medication for my acid reflux, but it takes time to work.  I’ve never had it so bad before, I could not touch my stomach without it causing more pain.  I would love to have been able to take Maalox, it was always my go-to fix when my stomach was acting like this, but unfortunately I haven’t been able to find Maalox or any medication like it that I can take, they all have something that will cause my fructose malabsorption to attack.  I’m happy to report after a couple of days of a pretty bland diet, and extra acid reflux medication, my stomach is once again pain free…..for now.  I do try hard to not eat anything that will cause excess acid production, and I don’t think I did eat anything offending before this, however, stress can also cause excess acid production, and the pain from my bladder was causing me much stress.

When I first saw the doctor here I was having pain in my bladder and she tested my urine and found nothing, I have an irritable bladder and we decided it was just spasming.  So when this pain started I thought it may be the same.  Unfortunately, this pain kept getting worse and worse.  Every time I moved it hurt.  Sitting was very painful, so was walking.  I’m sure everyone who’s ever had a UTI will also know that I was having to go more than usual, but couldn’t urinate once I got in the bathroom…and it was very painful.  All of this started on Sunday, the 3rd, I had just finished my antibiotics and steroids for the bronchitis 2 days before.  I couldn’t believe I had an infection again. I upped my already large amount of water I drink, trying hard to flush things out.  By Thursday, the 7th, I was convinced it wasn’t irritable bladder talking, something was wrong.  So off to see the doctor again.  Unfortunately, the doctor I’ve seen before is out on medical leave. (I hope she is alright, I mentioned before that she had pneumonia last month, so I’m a bit concerned.)  I saw another doctor in the office.  Not someone I really want to see again  I felt like he talked down to me, as if I was not able to understand things.  Stuart thinks I’m a bit too sensitive, and maybe I am, but this visit started off wrong (and Stuart later told me that he didn’t have a good feeling about this doctor either).  I told the doctor I have profound hearing loss and could not hear him.  He raised his voice a little, but didn’t look at me when he was talking, it didn’t help when I did see his mouth as he had a lot of facial hair and I couldn’t see his lips well enough.  I had to rely on Stuart to tell me what was going on.  He asked if I’d been running a fever, I explained that my normal temperature is 97.4F, and it has been around 99F recently.  He said, that’s not a fever, everyone fluctuates. (Then why ask me??)  I told him about just finishing antibiotics and just couldn’t believe I had an infection so fast….he says that antibiotics don’t stop you from getting something else….but it was the way he said it, as if what I said was stupid.  I never said they did, I am just overwhelmed that I’ve been sick so much recently.  I asked him about a medication I have for irritable bladder that is expired and wanted to know if I should get a new prescription….he went into this long tirade about how medicines don’t explode after the expiration date, and how there have been studies that medication that hasn’t been opened is good for years after the expiration date. I was so confused at how he was talking to me….and yes I heard most of that.   I told him that I know different chemicals have different half-lives, and I didn’t know the half-life of this medication.  Well he just went on and on about how drugs are not food and they don’t just lose it because of the expiration date.

He did examine me, but I didn’t feel that he listened to me very much.  That’s ok, I talk too much when I’m nervous anyway.  He told me my urinalysis was negative, but that could be because I was drinking so much water it caused it to dilute the urine too much.  He said I had all the classic symptoms of a Urinary Tract and Bladder infection so he was going to treat me for it.  He gave me an antibiotic specifically used to treat this type of infection, and told me if I wasn’t better in 48 hours to call the doctor on call or I could wait until Monday and call him.  Yeah, that’s not going to happen if I can help it.  I’m feeling better.  Not well, but better.

On another note….I’m so very proud of myself today!!  I took a bath by myself!  I even washed my hair!  I haven’t taken a bath or washed my hair without Stuart’s help in a very, very long time.  I’m thinking over a year.  Don’t worry I wasn’t being irresponsible.  Stuart was in the house and on alert for my call.  He also just couldn’t stay away the whole time and came in to check on me.  But I did fine.  A little wobbly, but that often happens with temperature  changes (cool room, hot water).  Or it just happens any time….heck most of the time…so I’m getting pretty used to it and how to handle it.  Being extra cautious, have hand holds, non-slip surface under my feet…..

(at this point I got too hot while writing this and started to feel funny, so I had to put it down.   Today, Tuesday February 12th, is the first day I’ve felt like coming back to the computer.  I think I’ll end this post here  If I start where I left off I’ll be writing another VERY long post….so I’ll have to write more soon)

Being Sick when you are Chronically Ill

sickduckI’m sure it’s not the same for everyone who has a chronic illness, but for me, being sick on top of it is very hard to deal with.

First when you get sick, you often have to distinguish if your symptoms might be from part of your chronic illness or illnesses.  That can be very difficult sometimes.  I often feel like I’m catching a cold but it goes away in a few days, so for those few days I don’t know if I’m really “sick” on top of things or not.  I also have a lot of gastrointestinal issues due to food allergies and intolerances, it’s really hard to know if I have caught a bug or if I simply got a hold of something I shouldn’t have eaten.  This can be very disturbing sometimes, and it can make me less likely to seek medical attention for things until it has been going on for a while.

(a lot of this post is a recap of what has been happening with me the past few months.  Please feel free to skip this narration, I felt I needed a place to put it all in one place.  The major points I want to make are in bold at the bottom.  thanks for understanding…and if you read everything, you are an amazing person.  *smiles*   It took me three days to write this, between feeling icky and having a vertigo spell….so please forgive any errors…grammar, punctuation, spelling, even train of thought…yes brain fog is heavy these days.  thank you my dear friends.)

 

I’ve written about how sick I’ve been over the last few months….I mean really sick, on top of my chronic conditions…what a mess.  But I’d like to give you a run down of what happened and how I think I really goofed up and made this hang on longer than it had to.

The third week of October both Stuart and I caught colds, it delayed our leaving for Tucson by a week.  At the end of the cold I had this nagging cough hanging on, I’d heard from many people who live near us that they too had been suffering from colds that seemed to hang on for weeks with a cough, so I wasn’t so worried.  We started our trek across country, my breathing got worse, especially when we’d stop for the night.  I assumed I was having a lot of allergies erupting on top of everything.  Often our hotel rooms had a perfume smell, air fresheners, and one smelled like someone broke a bottle of cologne in the bathroom (we did ask to move from that room, but there was a convention in town and no more rooms were available).  We would have researched and found more allergy free accommodations for me, but those places would not allow cats, and Max needed a place too.  We do however always make sure we have a no-smoking room.

By the time we got to Tucson I was having a very hard time with the cough and breathing issues, but again, thought it was more allergies.  I felt that most of the stuff was coming from my nose…but I was wrong, that was only part of it.  Soon after we got here I started having severe vertigo attacks…Meniere’s was not kind to me.  I know the trip took a lot out of me,and I hadn’t been watching my salt intake as much as I should have..so I just thought my one of my chronic illnesses was in acute mode.  I still didn’t think I was really sick, sick.  (big mistake)  In the back of my head I knew I should go to the doctor for the cough, but I was so busy going to the doctor about my ears….and the holidays were upon us, it’s pretty hard to get in to a doctor as a new patient that time of year…so I thought I’d wait.  (again, not a good idea)  I continued to get sicker, no energy, coughing more, not being able to take a deep breath…..ect.  I did not get to enjoy one bit of the holidays (oh how I wanted a family holiday gathering, but I spent all of it in bed).  Finally, I told Stuart to, “Yes, please call and see if you can get me in to see a doctor.”  (he’d asked many times before and I said no, really I thought it was allergies, ragweed was in full bloom here when we got here, and the house we are staying in had been empty for a long time so lot’s of dust…I didn’t think the doctor would be able to do much more than I was.  Yes, I know…silly girl treating herself, but every spring I have severe allergies at home and I’m put on Flonaze, and 2 antihistamines.  So I did that, I was also taking an expectorant to break up the mucus and get it out….really all good things, and the doctor agreed, but I needed more.  And the Flonaze was causing me to have miserable nose bleeds. so that stopped.)

First trip to the doctor, (don’t you love a first trip to a new doctor, explaining all the reasons for your medications, all the things you have going on….ugh!  She actually said I was a very happy person for having so much going on with me.  I thought, well I could show the sad, depressed side of chronic illness all the time, but who would that help?  I may be ill, but I’m still a good person.)  I found out my minor Asthma (I haven’t had but a few attacks in the past 20 years or more, and only when I’ve been around strong allergens or perfumes.) has turned out to be pretty serious.  And I have Bronchitis…the Asthma probably got so bad because of the Bronchitis….and allergens.  So antibiotics, and a steroid….call in 10 days if not all better.  Stuart called after about 7 days because I was worse.  Ironic thing…my doctor had just gotten out of the hospital with pneumonia.  Actually scared me a bit, what if I had pneumonia…many of the symptoms were there, even the cold chills.  But then I laughed at myself…I had the pneumonia vaccine in May, I had to have it before I could get my Cochlear Implant. (that’s what I get for trying to diagnose myself with just the internet.  We can get some clues from there, but I’ve learned never to think it’s absolutely true for me.  Always consult a professional, or two.)  So I saw my doctor again on the 21st, 2 weeks from the first appointment.  Still not breathing well…ect, and my sinuses really hurt.  Diagnosis?  Still Asthma is going crazy, now bronchitis is considered chronic, and I have a sinus infection.   I was given a stronger antibiotic, prednisone (oh joy, more steroids), and I had a breathing treatment in the office with a nebulizer, for the first time in months I could breath, it lasted for hours, I was thrilled.  I was told if the cough was not much, much better in 3 days to call back and I would get a nebulizer for home.  But that night I started coughing so hard I pulled a muscle in my back.  I couldn’t walk without being in severe pain, putting weight on my left leg was almost intolerable.  Thank goodness for my walker, but darn the fact that I haven’t found a bathroom door that my walker will fit through!  So, I could get from the bed to the bathroom, then hobble inside.  What a mess.  I didn’t sleep that night, stayed on heat and ice, and luckily the next day it was much better.  I still rested with ice and heat to insure it got even better, but I could walk with minor discomfort.

So…yesterday Stuart called the doctor’s office…after 3 days, to tell them I need a nebulizer.  (really, I can get a nebulizer, I need the medicine that goes in it)  Unfortunately, they close early on Friday, and didn’t get the prescription called in before the end of the day…so I have to wait until Monday.

Another thing that I’m having trouble with.  Migraines!  Did you guess?   I had very good results from the Botox injections, but they have worn off…I am looking forward to March 7th, when I can see my neurologist at home and have the injections again.  (deep sigh)  I’m having a hard time with pain medication.  I was taking Hydrocodone, but it started making me itch, I’m allergic to Codeine (at least I’m told I am, I had the allergic reaction when I was pretty young, I don’t remember, but why would it be wrong?), Oxycodone makes me stop urinating, I’m allergic to Celebrex (I know this one is right, I have the ER trips to prove it.), and all NSAIDS hurt my stomach (thanks to an old doctor who had me taking Ibuprofen by the handfuls).  Before I left N.C. my neurologist put me on Tramadol (Ultram), well it makes me itch too!  So I’m stuck without a pain reliever stronger than Tylenol.  It’s been rough.  (I do still have other migraine meds, but sometimes you need a pain reliever…when I pulled that muscle it would have come in very handy!)

This post has become MUCH longer than I’d planned. I needed to put all of this in one place, and I wanted to make a point…but I think my point may have gotten lost.  Here’s the summary of what I’d like for you to take from this post:

  • When you are Chronically Ill, you need to pay close attention when you get sick.  Do not assume it’s your “normal” ill feelings.
  • Do not put off going to the doctor, if you don’t have anything worse than a cold, what did it hurt? (Yeah, our doctors may think we come in too often, but really if our doctor thinks that we should probably find a new doctor.)  I’m sure we often feel we go to the doctor too much, but don’t play around with your health.  Don’t be scared because if you are out of town and not close to your doctor.  Who knows a fresh pair of eyes may be helpful in many ways.
  • Often when you have a Chronic Illness you have less resistance to fight off sicknesses, like the “common” cold, than healthy people.  I know my body works over time just to take care of me with my chronic illnesses, throw in getting sick and there just isn’t enough resistance in me to put up a good fight.  I should have known better, and gone to the doctor sooner.

So the biggest point I want to make.  Know your body.  Know how you feel on a day-to-day basis, if you get sick, pay very close attention and take care of you.  You are the only one who can say if you need to see a doctor.  But don’t be like me, please see a doctor before things escalate into a more serious sickness.

I know I will always listen closer to my body than I have the past few months.  Just because there are other things going on in my life doesn’t mean my symptoms aren’t something I should pay attention to!!

 

A cold is not cold, so why do they call it a cold?

Opps I forgot to Publish this…*smiles*  So it’s a little out of date, but much of the info is still good.   This post was more of a Freeform post….I just sat down and wrote, if I felt like it or not and didn’t re-read or edit so please forgive the errors that I’m sure are in abundance…..so…here’s for a bit of out dated news   (I’m pretty much over my cold, it’s still hanging on with Stuart)

You will not believe this, but I thought I finally published this yesterday! I looked today…no it was not there.  I think this post is haunted….read at your own risk.

For the past week I’ve been taken over by the cold virus.  (you aren’t normally cold when you have a cold…so where did that name come from….and no I really don’t care enough to try to look it up…just pondering.)

My dear sweet husband that does so much for me caught my cold around day 4 of my dreaded mucus maker.  He is such a trooper.  I can look look at him and tell how bad he feels and how tired he is, but still he would take care of me.  I will admit, I have not been able to walk very well since I caught this virus, my ears do not like a head cold!  I started feeling  better a few days ago (ok, maybe 2), but when I’d try to walk around I’d start spinning.  Back in bed for me.  So Stuart has been left to nurse his own cold and take care of me too.  We’ve had a lot more takeout this week.  Honestly, for me, just put my meds close enough and feed me (a lot, this cold has made me ravenous….strange for me when I’m sick!), and I’m ok.  I have been sleeping more than I thought possible.

Oh, I must tell this story.  I always thought I was very careful with my medications….but I did a really stupid thing the other day.  I have my Diamox sitting by my bed because I have to take one as soon as I wake up to keep my cerebrospinal fluid regulated.  I reached for it and took a pill….then thought, that pill was way too small.  I then really looked at the pill bottle.  My prescription for Ambien had been left on my nightstand, instead of in the drawer, and I took one of those.   You can guess what happened, I went back to sleep and slept all day!  But first I decided I should try to do a couple of things….like answer some emails….not the best idea.  My husband also told me of one thing that happened that I don’t remember at all.  Yes, I thought I had always been very careful with my medication, but I will me much more diligent now!

As a result of this cold I shared with my hubby, we have decided to post pone our leaving for Arizona by a week.  We should be leaving on the 3rd now.  The cold just put us way behind in getting things ready to go.

It also postponed my hair appointment.  So it’s still long.  And I may keep some length.  The test results didn’t show any reason that I should be losing my hair, and my doctor said I may want to see a dermatologist.  But she also put me on Biotin.  I changed my shampoo and condition to one that is supposed to give you more lift or something, I got a real boar’s hair brush, and I’m taking the Biotin.  Much to my surprise, I looked at the back of my hair this morning and I couldn’t see scalp.  I asked Stuart and he said he didn’t see the “balding” spot I’ve had for a while now.  My hair seems to be getting thicker.  So….my hair appointment has been changed to Halloween.  We’ll see what happens.  Stuart said it could be a horror, or perhaps magical.   (the magical suggestion came after I told him he was mean and scaring me.)

I’m a bit disappointed we are leaving later now.  I love Halloween, and I’m not prepared for it. The house isn’t decorated, I have no costume, I don’t have the treat bags put together, and would need to purchase more stuff.  I think our house will lose its reputation this year.  (the first year we lived here we had less than 20 kids Trick or Treating….last year we had about 100, they come from different neighborhoods to come to our house….it has kind of gotten a little out of hand….but I love it!)   But I’m not prepared!  This year, the kids will just get candy.  (normally, they all get treat bags…made for different age groups…with things like pencils, stickers, Play-doh, glow sticks, temporary tattoos…..all kinds of things….plus they get candy.)  yes, my house is the house to come to!  We often have a grave yard set up with a fog machine….oh I love Halloween.  The decorations are just so cool.

Yes, I’m rambling a bit.  I’m still tired from my cold and when I’m tired I ramble….or sleep…..I think that’s next.   No wait, I’m hungry!

BTW:  I always buy my treat bag goodies right after Halloween for the next year, I don’t spend a lot….and it’s really worth it to see how the children love them.

Being sick when you are Chronically ill.

image by Fukari on deviantArt.com

People who are chronically ill have to deal with symptoms every day…some days are better, some are worse…but what about when you get sick from something else.

Even a cold can knock me for a loop.  There have been many times this year that I’ve felt I’ve had a cold, but it’s only lasted a couple of days.  What was that?  At least it didn’t last long.  I keep thinking it’s probably allergies.  Now, I feel like I have a cold…Day 3…perhaps I really do.  But ragweed is really blooming here and it’s EVERYWHERE!  So maybe??

It doesn’t matter, it’s causing the same symptoms: scratchy throat, more mucus, stuffy ears, a bit of a headache, (but much less than usual when I’m sick).  Being sick, when you are already sick can cause all sorts of trouble.  My ears are stuffy…not a good thing.  I walked in the bathroom night before last and just before I got to the toilet the world moved and my world started to go dark.  This is the closest I’ve ever come to taking a complete nose dive straight on the bathroom floor.  I held onto the sink for dear life, and started squatting down…thinking if I fall it won’t be as far to fall.  I called Stuart and he saved me.  It didn’t last long, and I felt a bit guilty for waking Stuart up, but if he hadn’t come I would have been on the floor soon and preventing that is much better than trying to get me up after I fall.  He was a dear and stayed right with me.

I’m not sleeping well because of this cold thing…and that’s not good for most chronic illnesses, mine is no exception.

I can say my head has been feeling much better.  The day before I started feeling sick, the day was overcast and just yucky.  The type of day that normally sends me to bed with a category 8 migraine.  I actually went out that day!  I did not have a migraine!  Unbelievable.  So maybe the Botox is working..(crossing fingers and toes).  What ever is causing me to have less headaches I’m happy.  This week has been nice….as far as the head pain goes.  : )

All of this brings me to another question.  Sometimes when I have symptoms of getting sick, it mimics symptoms that I get from my chronic illnesses.  If you have this problem, how do you tell the difference?

For example, I have a lot of gastrointestinal issues because of the gluten and fructose intolerance.  When I have any tummy issues, running to the bathroom sick, I automatically think I must have eaten something I shouldn’t have.  or was hit with cross contamination.  But, what if it’s really a stomach bug, or worse…food poisoning?  I keep thinking it’s my fault, I ate something I shouldn’t have, when I possibly should be heading to the doctor.

Or with my ears.  I get off balance, feel like my ears are full…all symptoms of Meniere’s that I have often…but what if I’m getting an ear infection?  This has happened numerous times.  I end up getting a very bad ear infection because I think the first signs are just my normal stuff.

I don’t really expect any answers.  I try my best to be as in tuned with my body as I can, to notice if something isn’t exactly like the usual symptoms, but it’s hard.  The thought of going to the doctor and being told it’s nothing just makes me cringe.  (but we’ve all had that haven’t we) I think all we can do is try hard to keep ourselves as healthy as we can in spite of our chronic illnesses, and really pay attention when you start to have more symptoms than normal.  (doesn’t that sound strange, that we have symptoms that are just every day normal things.)

A little update on other things.

I was supposed to get my hair cut today, but it has been postponed until next Friday.  Not that I don’t like my long hair, but it’s thinning, and the doctors haven’t been able to figure out why yet.  She put me on Biotin to hopefully help some, and I may have to see a dermatologist…but that will have to wait.  In the mean time, I’m getting my hair cut to make the thinning less obvious.  (right now I have to wear my hair in a pony tail, or tied back so it’s not visible.I’m not saying I have a huge bald spot or anything, It looks like I have a wide part trying to go down the back of my head, and I can’t cover it.)  So next week, I should have photos of before and after!  I plan to get about 10 inches cut off.  I’m donating it to Pantene Beautiful Lengths.

The progress with the CI (cochlear implant) is going well.  I’m hearing more, but things still sound a bit tinny.  I hear best with the CI and my hearing aid at the same time.  I’ll see the audiologist and Dr. K. again before I leave for Tucson.

We leave for Tucson, AZ on the 27th.  I can’t believe it’s almost here.  It’s been months away for so long, now it’s just around the corner!  So much to do…actually, my darling husband has done almost everything.  He’s a wonder!

One more note about the Botox….as Allison said on her blog about her experience, I’m having less expressions with my eyebrows.  I had an appointment with my therapist the other day and she actually noticed my expressions were not quite right.  I guess that’s why she gets paid the big bucks (haha) she needs to notice things like that.  It was strange to say, oh it’s just the Botox.  (she already knew about the treatment).

I’ve had another couple of breakdowns abut Sandy…I think it has actually helped some.  To get it out and not hide it, to let people know how very much I’m still grieving.  The last time I broke down (I really breakdown, can’t talk, sobbing, shaking all over….ect)  Stuart said the wrong thing.  He didn’t mean it and thought it was helpful but…he said, “This isn’t helping”.   No shit!  Well, him saying that actually did help, I got so mad it him it snapped me out of it.  He really felt bad…just awful really.  I couldn’t stay mad long, but it was a learning experience for both of us.
Sandy is still with me.  She always will be.  As someone told me, I have a Sandy shaped hole in my heart and nothing will be able to completely fill that shape.  I do hope I’m through with the complete breakdowns.  No fun, and Stuart is right, it doesn’t help.  It actually hurts me physically, then I’m hurting everywhere.  My therapist suggested some art about Sandy.  I had started some, but haven’t finished it….I have a lot of things I’ve started but haven’t finished  (I’ll take photos some time, and you can see the great unfinished works of W. H.)

I’m sure I’m leaving something out….but there is always next time.  : )