Tag: Fear

Over did it, and Just Saying “No” – my answer to the holidays.

On By WendyIn Chronic Illness, Meniere's Disease7 Comments
REST by W.Holcombe.

**this post was started on Wednesday evening, finished Thursday morning**

Yes, I had a great day earlier this week…Monday I think it was, things are all a blur now, I had a beautiful day.

After my beautiful day, I hurt so terribly that night.  Every muscle, and joint ached.  I took a very hot bath with Epsom Salts, like my massage therapist tells me too.  It helped, but then I got all woosey and dizzy when I got out of the tub.  Change in temperatures was too much for my head.  (I tried to do it gradually, but it didn’t work out.)  Luckily the dizziness subsided, but I had a very hard time sleeping because of the pain.

The next day was an in the bed day.  Just one big ache, and the tinnitus was yelling!  So I just relaxed, was on the computer for a while, read for a while, and drew for a while…made a lovely butterfly, I’ll share it soon.

Today, I awoke feeling better.  I got up, went downstairs and started to make my own breakfast.  Then I started to feel a bit unsteady and turned it over to Stuart, didn’t think I should be using the stove.

Twice today I had an attack!  However, they didn’t escalate to the OMG I’m going to die while retching my guts out, type of attack.  They both came on fast, and we worked fast getting the meds in me.  Stuart got everything prepared, but it calmed down.  On both occasions, my head started to spin, I got very hot, and my stomach started to do flip-flops.  I do remember saying earlier in the day that I felt like I had a nervous stomach, Stuart asked what that meant.  I explained, “I feel like I used to when I was about to take a big test, or a date was late picking me up…that kind of thing.”  He smiled at the date thing, but hey, I’ve being stood up is a horrible feeling.  However, that passed, I felt alright.  Then a bit later, I was oh so sick.  I wonder if the “nervous” stomach was a clue?  I’ll try to pay more attention to the next time that happens.

**added to post Thursday morning**  I didn’t have to wait long.  I tried to get to sleep a little early last night, finally around midnight I drifted off, and about 6:30am I was dreaming I was spinning, and woke up to the world in a full spin.  This attack was already in full-blown nastiness before I could move my head to get meds in me.  It didn’t last long, thank goodness.  And I will spare you all the details this time.  One thing that continues to linger with me about it, is my headache.  I slept a few hours, but my head hurts so much.  I finally felt I could keep something down long to eat a little, just so I could take a pain pill.  Right now, my head still hurts, and my stomach hurts….what a great way to start the day.

I don’t understand it.  3 attacks in less than 24 hours?  It’s such a turn around from just a few months ago.  Do I continue to try to get back to that with Dr. Gray?  Or do I push for a different treatment?  But if I get a different treatment, how does that affect my low cerebrospinal fluid pressure?  So many questions, and some how, I don’t think I’m going to get many straight answers.  I see Dr. Kaylie next week, and Dr. Gray on Dec. 5th, we’ll see what happens.  I think I’m going to get a lot of , “it’s up to you”, but I really need some advice.  I hope they won’t let me down, and I really hope they will work together on this.  What will I do if one suggest one treatment and the other suggest something else?  *OK, my mind is officially off-line right now*

I planned to do a post on how to better prepare ourselves for the holidays.  You know, trying to reduce the stress of the season.  I came up with a fool-proof plan for me.  I’m just not going to do it this year.  Yes, Stuart and I may do a little bit here at home just for us, but for the most part, I’m just saying “No”.

I can’t go to parties right now.  The noise makes enjoying myself impossible, and I feel very isolated.  Since Stuart just lost his job, we can’t give presents like we normally do.   We really need to be on a tight budget, who knows how long this will last.  Hopefully, not long, but we need to be prepared.  Plus, I simply don’t have the energy to do it this year.  I’m also terrified of having an attack at someone’s party.  Can you imagine?

I do think I will send out cards.  I want to send some people personalized letters that explain why I’m AWOL this holiday season.  Explain more about my illness, and stuff like that.  I think a personal letter will help people understand just how personal this is, and how it personally affects our relationship.  (another tip from Toni Bernhard, from her blog in Psychology Today, “Turning Straw Into Gold”.)

I still really need to work on learning how to know when I’m doing too much.  I don’t like having the fall out after a good day.  My friend Rita, over at Soul’s Comfort Corner , gave her secret, “The only thing that helps me is using a timer. Otherwise when I am having a good day I inevitably overdo it. If I limit my sessions to 45-60 minutes and spread them out over the day I can “usually” do something almost every day even if I am only good for one session on a bad day…..”  What a great idea!  I’ll be trying this one, as soon as I feel I can move.

I hope everyone has a wonderful holiday season.  I’ve read a few articles that talk about how to make it easier on people with chronic illnesses.  The biggest one is to know how to limit yourself.  You don’t have to be super person, do what you can, and don’t beat yourself up when you can’t do something.  There are lot’s of hints, but I felt that was the biggest thing.  Take your time, and enjoy yourself, don’t push yourself too hard.  Wouldn’t you rather do less and really enjoy it, or do too much and be in agony?

We all know I have a very hard time with knowing how to pace myself, so I’m just bowing out this year.  We don’t do a lot anyway, we don’t have family close, or a close family, so this won’t be that hard.  I hope.  I really hope I don’t get depressed because I feel left out.  I want to feel joy that my friends can have a good time and enjoy themselves, even if I can’t be there too.  (of course, without me there, will they really be able to have a good time??)  hahahaha

Seriously, I’ve been reading Toni Bernhard’s book, How to Be Sick, and she talks about feeling joy in the joy of others.  This is something I really want to work on.  She mentions how easy it is for our emotions to turn to envy, and I know I feel that way towards some people, and some things.  I want to stop that, and feel joy that others have the opportunity to do things I can’t.  (Thinking, this will merit its own post.)

Here’s the link to a couple of Toni’s blog post I think you might find very interesting.  The first is a post about Heading off Holiday Stress, the second is How to turn Disappointment into Contentment.  I think both are very useful for making the holidays easier.

She’s Low – Again…

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain6 Comments

Hope you don’t mind, but so I don’t have to tell the story over and over….you know how it gets.

Here’s a copy of the mass email I sent out to friends and family last night:

I had a lumbar puncture today. (as you know I haven’t been doing well for the last few months.)

The doctor expect to find that I had high Cerebrospinal Fluid (CSF) pressure.  She said I had “high symptoms”, so we go in expecting my CSF to be high.  Surprise, it was low.  Lower than it has ever been.  (this was my 6th LP).  She decided, since I had so many symptoms of high pressure, she was going to take some CSF out to see if I felt better.  The more she removed, the worse I felt.  my head started to hurt so bad I couldn’t stand the light in the room and I was getting nauseous.  So she put back in all the fluid she removed, and started adding more.  5cc’s at a time.  She ended up adding 15cc’s extra.  (they said that’s a lot)

My pressure went from 15 to 21.5.  Now they have a number that I feel my best at. if they check me again, they know something is amiss if I’m under or over 21.5.

So right now, I have been taken off all meds that might lower my pressure.  I have to drink a lot.  (I think I already do, but she said more!)  Trying to keep my pressure up without having to do more patches.

I’m hoping that we can at least keep it up long enough that I can attend Stuart’s dad’s wedding.  If it drops after that, I’ll be seeing Dr. Gray again.  She compared the two myelograms (CT scans done with contrast that shows leaks) that I’ve had.  One from November 24th, 2010, the other from August 22nd, 2011.  She said there were no real new leaks, the leaks came from the same places.  I was just breaking through the patch matterial a little on some, or perhaps the patch didn’t cover all of the leak.  Also, from what I understand they didn’t patch them all for fear of making my pressure spike too high.  She said she saw 2 spots she knows she would want to patch if my pressure drops again.

Unfortunately, she said I’d probably notice the results in a week or so, then I could just come in and get patched…but it often takes a month to get in to see her.  That would put a bit of a kink in a trip to Tucson.

So I will drink many fluids, and stop avoiding caffeine so much.  (caffeine can raise your pressure)

Thanks for all the healing thoughts today, I felt them all.  Really, I did!  I think it’s amazing that so many people were thinking of me at the exact same time!  How Awesome!

One last thing  Other than my back hurting a little, I feel great!

That’s how the email ended…then later that night…

The tinnitus started getting loud again, and my hearing kept cutting in and out. (well, the hearing in my right ear, how would I notice in my left ear…unless of course if it came back.)  It was so strange, I’d be listening to Stuart and all of a sudden I couldn’t hear him, then I could, then I couldn’t…We put a new battery in my hearing aid, and Stuart even listened through it for a while to see if it would cut on and off…nope, it was me.

Now today, I still have a buzzing tinnitus that’s a bit louder than I’d like, but I can hear again…not off and on.

Strangeness.

Found a cool article about it…it starts out “A decrease in cerebrospinal fluid pressure may result in an endolymphatic hydrops ….”  Well, that’s interesting.  The case study isn’t like my case, but it’s interesting just the same.

Now, let’s move back to my first arrival at the hospital…

When we arrived to check in we were told I had an appointment on the 17th, but not the 11th.  Stuart explained, that he spoke with Dr. Gray and she had a cancellation on that day, and said she could see me sooner.  The person at the check-in desk got on the phone, and we stood there and waited.  I started to cry, but think I hid it well.  She asked us to wait in the waiting room while she tried to find something out.

I broke down.  I told Stuart that if I didn’t see Dr. Gray that day, I wasn’t coming back.  I’d call Dr. Kaylie and tell him, I was finished with all of this, and we’d have to find something else.  I wasn’t going to continue to wait months and months to see this doctor for a glimmer of hope.  (yes, I know, probably a bit extreme, but if you’ve been reading this blog, you know I have been scared and my emotions have been raw and on edge.)

Finally, they said I did have an appointment, but Dr. Gray was running late.  Very late.  My appointment was at 3pm, and they didn’t get started until after 5pm.  (I think they messed up the scheduling and I didn’t have an appointment, but Dr. Gray decided to see me as the last patient.)  But at least I got in there, and I know something now!

I’ll share with you the first doodle I did in the waiting room:

Little Miss Sad Mad
As you can tell this little lady (my inner self) was very mad!  Gnashing her teeth, sparks flying from her head…I wouldn’t want to be in her way!!  On the other hand, look at the eyes, they are very sad…poor thing so conflicted.
My next doodle was much more…well, just a doodle, but Dr. Gray saw it and just went on and on about how I was hiding being an artist…and how much she loved it…so I gave it to her.  She hugged and kissed me.  (maybe if I need another appointment, I will use a drawing as a bribe to get in sooner!) hehehe
I’ll keep you posted as my symptoms change.  (headache is barely there today!!!! and I’m not dizzy!  Woo Hoo!)
I’m sorry I haven’t been keeping up with my reading and commenting on other’s blogs.  I will try to catch up soon, I promise!  Hope it’s all good news.
Thank you all again, for the caring comments, thoughts, notes…ect.  It means more than I could ever express.

Why am I so nervous?

On By WendyIn Medical Tests, Meniere's Disease, Pain10 Comments

On Tuesday I will be receiving 6th, Lumbar Puncture.   I know it’s not a big procedure.  It doesn’t really hurt.  But I’m so scared.

After the first LP, they thought they knew what was wrong with me.  Low CSF pressure caused by spinal fluid leaks.  Simple diagnosis, treatment hasn’t been as simple…I keep getting leaks.  So now. as I mentioned before, we are facing a possible new diagnosis.  (Intercranial Hypertension with Spontaneous CSF leaks)  From what I understand, even harder to treat.  The meds that are supposed to help, well, I’ve been taking them and either the side-effects are too much, or I don’t see where they are doing anything.

A possible shunt has been mentioned.  (I don’t even want to think about that right now, but I know it’s a real possibility.)

I have such conflicting emotions right now.  I feel emotionally stronger in many ways, and in other ways, I’m scared out of my wits.

The art has been helping me so much!  There is a possibility I may have a small show in the next 6 months or so.  Something to really work towards.

I have finally come to terms with the fact that many of my friends are simply not going to be there for us.  But we have some good neighbors who proved recently that they can be relied upon.  It’s hard to explain, but I’m better about it.  Not as hurt…finding out who are really important to me.

So, back to the fear.  What am I really afraid of?  I think I’m mostly afraid of an iffy diagnosis.  One of those, “Well, we know what it’s not….”

That’s where my head is tonight.

I’ll leave you with this drawing I did the other night.  I was trying to sleep…all of sudden the idea of this came to me..I had to draw it!

Window of the phases of my life.

You can find out more about what each window pane represents on Create to Heal.

Scared out of my wits…

On By WendyIn Life10 Comments
Please, no more trips to Duke's ER department any time soon.
I have just come home from the hospital.  I’ve been there for over 11 hours with Stuart.  I’ve never been so scared in all my life!  We didn’t have eggs this morning and he went to the store to pick some up.  He was gone over an hour. (we live 1 mile from the store).  When he came in the door he was pale as a ghost, sweating profusely, and couldn’t walk straight.  He couldn’t talk right.  I asked if he’d been in an accident, he said no, he just needed to sit down.  Well I knew that wasn’t right.  I got him sitting down and ran upstairs to put some pants on (I had on thin shorts), and rushed him to the hospital.  He couldn’t get his words out, he was seeing double and he started throwing up.  I ran in the hospital asking for help – I was so distraught they thought he was coding…well heck, I thought he was dying!!  (Yes, my coping skills were not as high as they usually are.  I’m just so glad Stuart didn’t notice.)
 
They thought he was having a stroke.  They gave him a CT scan, and a contrast CT scan, they came back normal.  They asked if he could be dehydrated.  I don’t see how. We hadn’t done anything strenuous or in the heat for days.  He drank plenty yesterday.  (and said he “had a big pee this morning.”)  (of course, when they were checking him in they asked how much he weighed and he said 120, my husband is 6 feet tall, and a bit over 200lbs.  I don’t think he was thinking clearly.)  They thought his blood sugar might be low…nope.
They pumped him full of fluids, and after the first CT scan he threw up again, then went to sleep.  When he woke up, just minutes later he felt and looked much, much better.  
The doctor said it sounded as if he may not have been getting enough blood to his brain.  They are checking his heart out tomorrow.  They will be doing a stress test MRI in the morning.  Where they stress the heart and do an MRI at the same time.  He’s in observation right now.  I came home to get some sleep, but I’m still so stressed.  My head is roaring.
 
When I left he was acting and looked like his usual self.  But I keep thinking how close it came.  He can’t remember his trip to the store.  His receipt says he bought 2 doz eggs, 1 box cereal, 5 sodas, and 1 carton of milk.  He carried in one bag, it had the eggs and cereal in it.  There is no sign of the sodas or milk.  I have no idea what he did with them.  I can’t believe he drove home in that condition.  And he can’t even remember shopping at all.
I feel so lucky that he made it home.  I’m so afraid to lose him.  I’m so afraid for him.  

My hearing has been down for 3 or is it 4 days now?  I’m so afraid I’m going to have an attack at any moment, then how can I care for him?  How can I be there for him like he has always been there for me?  Yet, how could I not?  I’m so scared.

Stuart’s worried about his job.  The last guy who had his job left under mutual consent because right after he took the job he started getting sick all the time, in and out of the hospital.  Stuart is still a contract employee, he won’t be full time until July 16th.  They could decide not to hire him.
He’s also upset because he isn’t happy with his job, and doesn’t fill fulfilled.  I don’t know how to help him.  I wish I could get a job and make enough money where he didn’t have to worry about how much he made.  But I can’t.

Well enough about that.  He will be getting the cardiac test tomorrow morning sometime between 9 and 12.  If it comes out ok we could be home by 2pm.  I want it to be ok, but then again, I want to know what happened.  I want it to be something small they can fix.  I don’t want to be constantly wondering if it is going to happen again.  He did not realize he was doing so poorly.  He really wasn’t thinking clearly.  And now he doesn’t remember it.  The memory lapse is really scaring him.  He doesn’t really want me to know how scared he is…but I know he is.  And I don’t want him to know how scared I am…but I’m sure he does.