Tag: chronic illness

What to say, when you don’t feel like talking?

On By WendyIn Chronic Illness13 Comments
Depression by ninykinin via DeviantArt.com

I’m sorry to my followers, my friends, that I have not been around much.  I am a bit overwhelmed by so much that has been going on that I haven’t told you about, and I’ve been sucked into a depressive state.  I keep trying to pull out of it, I even have a new medication, but I’m still just blah.  I wake up in the morning, and often feel awful for the first hour or two, it takes me a while to feel like a real person, then when I actually feel alright, I think what reason do I have to get out of bed?

I don’t find pleasure in the things I used to be so passionate about, like art, cooking, blogging….ect.  I do still find pleasure in reading, perhaps it is an escape?  I also still find pleasure with my husband, just being next to him makes me feel better.

I will be seeing my psych. tomorrow, I’ll discuss this with him, and we’ll see if I should increase the antidepressant I’m on, or try something else.   I’m sure he can help pull me out of this.

If you have been reading my blog for a while, you know that I’m normally very positive.  This turn of emotions has hit me like a wall, I don’t feel like myself.  I need to get my positive outlook back.

The ironic thing about this, I’m actually much better.  I have the weird feelings when I first wake up, but I think that’s because I’ve been horizontal for so long that my cerebrospinal fluid raises a bit, and I have to sit up for a while, and take my medicine before I feel better.

I’m still having migraines, but they aren’t as intense.  I’m still having Migraine Associated Vertigo (MAV), but not as often, and when I do it doesn’t last as long.  Maybe I’m just getting the medication in faster, all I know is it’s better.  I’m still having chronic migraines though, yes they are better, but they still knock me out of commission for a while, so my doctor is starting a new treatment plan.  We want to get it where I’m having much fewer migraines, not just less intense.

No Meniere’s vertigo!

My surgery has FINALLY been scheduled!  July 19th, I will receive my bionic ear!  (my implant is from Advanced Bionics…so I can literally say I will have a bionic ear!)  Two weeks after surgery they will turn on the cochlear implant.  (I wrote a post telling all about the processors I chose, but that’s the one WordPress deleted half of, so I need to finish it again…I will try to do that soon, so you can see what will be hooked to the side of my head.  I’m sure you are all eager to see that!  : )  Just wait until you see it actually on my head!

Other things that have been happening:  We got new carpet.  We replaced our worn out couch.  We had our mattress replaced under warranty…it wouldn’t bounce back.   So the house is full of chemical smells, and I’m so sick!  I keep trying to stay in rooms with less chemical smells, but I’m still coughing so much my throat is sore, my head hurts, I’m so tired all the time….ect.  I’ll be so happy when I can breathe in my own house again!

Tell me is it normal to feel down when you start feeling better?  Yes, I’m feeling better but not to the point that I can do everything I want.  Since I feel better, I’ve begun to resent that I can’t drive, I can’t have that independence.  I hate that Stuart has to be with me for me to leave the house.  I know with the uncertainty of vertigo it’s even dangerous for me to walk around the block by my self.  I resent that I have to be careful of all the food that I eat.  We took a little trip this weekend, and it was so very hard to find food that I could eat.  I felt horrible, every time we wanted to eat it was such an ordeal.  It’s not so bad locally, we know places that are safe, but I didn’t think about not being able to find safe food on the road.   We tried so hard to make sure everything I ate was safe for me, but still I got sick.  On the way home we had to stop numerous times so I could run to the bathroom.  I was so embarrassed to have that happen in a public restroom.  eww.

I used to find it a challenge and a pleasure to cook even with my restrictions.  I thought it was interesting to figure out how to change a recipe so I could eat it.  Now I resent that I can’t eat some things.  That I can’t cook whatever I want.  I don’t like this feeling.

Oh, I almost forgot, I had a birthday.  July 2nd!  My husband is a dear man, he celebrated my birthday for 4 days, and I’m getting my main present today!  So, still celebrating… he’s done something sweet for me every day since Friday!  He really made up for the one time he forgot my birthday!  haha  Funny thing, I thought I was turning 50 this year.  Stuart and I were walking along one day last month and mentioned my birthday, I said that this one was a big one, he asked why 49 was big for me, I said, “No, I’ll be 50!”  He looked at me, and said “No Wendy you will just be 49”.  I was sure I was going to be 50!  He said, “What year is it?”  I said, 2012….Ooooh!  I guess I’ll be 50 next year.”  How silly was that?  Here I’d been telling people for months that I was turning 50 this year!  hahaha

Well, I think that’s all I can purge out of myself at the moment.

I will try my best to blog more often, I really want to become passionate about it again.  I’ve missed my friends.

Pet Peeves

On By WendyIn Chronic Illness11 Comments
What annoys you??
image courtesy of dusty29100 at deviantART.com

We all have them…those little things that really annoy us.  I’ve noticed lately that I have more pet peeves than I realized.

I really annoys me when:

  • I write a whole post then I hit “Save” or “Publish” or “Preview”, and suddenly I’m told my login expired and I need to login again….of course, at least half of my post disappeared!  Yes this just happened, and I don’t have the brain power to do it again right now.  Ugh!  I how annoying!
  • I go to a party with many people in attendance, and the only towels in the bathroom are those little finger-tip towels.  Ick!  They are dripping wet within half an hour!  Why do people do that?
  • I go to a party and they have the rooms decorated for the party, but the bathroom is dirty.  again…Ick!  Of course, they also have no towel at all in the bathroom!
  • I email a company and don’t get a reply, or I email a company and explain I’m emailing because I’m hearing impaired and can’t talk on the phone, then they email me back that I need to call.  That’s just rude.
  • Insurance companies give you the run around….for weeks and weeks.
  • I am asked at the doctors before a procedure if there is any way I could be pregnant and I answer “no”, but they make me take a pregnancy test anyway…Why Ask?  Just tell me to pee in a cup!
  • people won’t admit to something they did wrong.  (for example, we had new carpet installed last weekend, in our bedroom there are two gouges in the wall.  It was covered by a paint that does not match our paint, it’s close, but it doesn’t match.  They didn’t even fill in the holes, just painted over them.  Now they say they didn’t do it, they said don’t have paint.  I KNOW it wasn’t there before, it’s right by the door, I see it every time I walk out of the room!)  Why do people not take pride in their work?  Or show respect to other people….and that brings me to another pet peeve….
  • people are rude!  So many people are rude and do not respect others, or their environment.  Think about the car that cuts you off and speeds away, only to get stopped at the same stop light you do.  The person who throws trash out on the road, or in a parking lot.  The person who leaves a grocery cart in a parking place.  People who are rude to those who provide customer service to them….like waitresses, cashiers…ect.   And on that note….
  • people do not get off the phone when they are checking out of a store, or at the bank…ect.  How rude is that?
  • people who talk on the phone, or text when driving.  Texting is simply stupid….what on earth are they thinking?  But…how many times have you been aggravated by how someone is driving, only to look over and see they are on the phone?  It’s illegal in our state, but people do it constantly.  (and I’m not talking about hands free)
  • I have to wait way past my appointment time…anywhere.  Why is my time considered less valuable than the person I’ve come to see?   And I really hate it when they are very late, and don’t apologize, or thank me for waiting…ect.
  • people who are very educated use bad grammar.  There’s a difference between someone who doesn’t know any better, and those who just don’t care.  (there is one person I know who should know better, but she always says “weren’t” when she should say “wasn’t”…it makes my skin crawl.)
  • people who write everywhere as if they were texting!  I have a friend on Facebook who writes her status updates like that…it drives me crazy, and I will admit I often do not understand what she is saying.
  • Things I’m looking forward to are delayed over and over.  (I got a call from my surgeon’s office today telling me we have to reschedule my surgery from July 11th to the 19th or after!  We just set up the surgery yesterday, now another delay.  I’m beginning to wonder if I’m meant to get this cochlear implant.  One delay after another.  This should have happened 3-4 weeks ago.  I’m so depressed about all of this.  It has been a constant stressor for almost 2 months!)  Yes! I am annoyed!  Heck, I’m downright pissed!

See what I mean? I have a much larger list of pet peeves than I ever thought I would.  Things used to not get to me so much.  But please note, I don’t hate the people who do these things, I simply hate some of the things they do.

I must practice showing understanding, and compassion….but I’m sure some of these things will always annoy me.

What is your Pet Peeves?  Are some of yours the same as mine?

Wonky, Sloshy Head

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease11 Comments
Image from deviantArt. “loose” by pehdtsckjmba

If you have Meniere’s, I know you know what this title means.  For the past few days, (actually I think it’s only been two, but it feels like a week!), I’ve had the wonky, slosh head feeling.  I dare not move my head too fast or I’ll fall down, really, I did this yesterday!  I haven’t felt like this in a few months, I wonder what has started it now?

Could it be….

  1. Hormonal Changes?  It’s that week, but it hasn’t started yet.
  2. Missing one of my meds for a day and a half?  (that’s 3 doses)  This is what Stuart thinks it is, but I’m wondering if part of that isn’t just him feeling guilty because he forgot to go and pick it up.   (it was Buspar for anxiety and panic attacks – these started in January, I haven’t felt more anxious the past couple of days, just wonky!)
  3. The weather?  We have had some big weather changes almost every day.  We’ll have beautiful clear skies, with a lot of heat…and then we’ll have a lot of rain all of a sudden!  But this has been happening for weeks, so why bother me now?  (it has been increasing my headaches, but I haven’t noticed the disequilibrium before.)
  4. It’s just that time?  We all know Meniere’s is NOT predictable.  So maybe this is just the monster saying hello.

I’m still so grateful that I haven’t felt like this in a while, actually I’m not sure the last time.  Not much since the surgery in December.  I have to say, I’m thrilled with the results of that surgery.  I have only had one mini vertigo attack caused by Meniere’s since my recovery.  Yay!  The Endolymphatic Sac Surgery was a big success for me.

(I’m still waiting on our insurance company to send the right type of letter to Duke, so I can get my Cochlear Implant surgery scheduled.  They have been so evasive about this, how hard is it to say that this is covered under our plan as of this date with an in-network doctor.  As long as our plan doesn’t change everything should be the same.  NO, they send a letter saying they can’t give a predetermination, because the plan may be canceled or changed, the doctor may not be in-network…ect.   They never even say if it’s covered by our plan at the present time!  What a pain!  So I won’t be getting my CI activated before my birthday….I’m so disappointed.)

I promise to write a post about this whole journey, and show which processors I chose, as soon as I feel a bit less wonky.

 

Hard to Get Started Again…

On By WendyIn Chronic Illness16 Comments

I miss blogging, I miss my blogging friends….but it’s hard to get started again.

Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed.   Eh….maybe not so much.  My life really isn’t that exciting.

I went through a bout of depression, that knocked me off my feet.  By that I mean, I didn’t want to get out of bed.  I’d wake up and think, what reason to I have to get up?  I couldn’t think of a reason, and the sleeping side effect was not helping!

Vancouver Sunrise by Lauazee from DeviantART http://fav.me/d32s7vm

I know part of the depression started when Sandy died.  But the biggest problem is a bit strange….at least to me, my therapist says it’s normal.  I’ve been feeling better.  The Meniere’s isn’t bothering much at all since the surgery in December.  The Intracranial Hypertension (High CSF), is minor and under control with medication.  My migraines are not as painful, but they are causing vertigo often!  So much so that there is no way I’ll ever be able to drive again.  The Migraine Associated Vertigo (MAV) gives me NO warning.  I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately.  I can’t even walk around the block by myself, or do things in the yard.  I tried one day, and it did not end up good.  So I’m stuck in our house, unless I have someone with me (meaning Stuart).  I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.

But I’m better.  Really.  It’s kind of funny.  I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….”  And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately.  So I started thinking about it, and I felt better.  Also we’ve been talking about fostering a dog, or perhaps adopting.  Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her.  This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.

Now that the sleeping has gotten back to normal, I’m feeling better about other things too.

We went to see the audiologist on Wednesday.  I picked out all the options for the Cochlear Implant (CI) that I want!  We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt.  And all I can do is, wait patiently.   I’m not the most patient person!

Now, I’m started… let’s see if I can’t make a habit of this!

Sleeping

On By WendyIn Chronic Illness9 Comments

There is so much I wanted to accomplish during my little hiatus.  Paying more attention to the spiritual side of me, painting, working on some things in the house….

What have I been doing?  Sleeping.  A lot.

First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day!  That’s never happened before.  On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open.  I’m wondering if one of my medications is bothering me, but nothing has really changed recently.  I was taken off one drug, but nothing was added when this started.

On the 12th I had the Pneumovax -23 vaccine.  It’s a vaccine for 23 different strains of pneumonia.  Including one that causes meningitis.  This vaccine is required for anyone who is getting a cochlear implant.

Unfortunately, I’m one of the people who had side effects to the vaccine.  Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue.  Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.)  I think I’m in the more category.

This has been an experience.  Most of the symptoms did disappear after the first few days.  The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say.  (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap.  While I was asleep the diarrhea struck, it didn’t even wake me up!  What a mess.  That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired.  We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep.  But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.

Still I’m tired.  It’s been 19 days.  I don’t think this is just the vaccination.  I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s.  It is easier to get through.), some medication, and probably just some of the stress from everything.   Plus, maybe some of the medication.

I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting.  Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance.  I’m really hoping this will happen soon.  I’d like to have it turned on by my birthday…what a present that would be!

In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.

Until then, I think I’ll take a nap.  After all I only slept 12 hours last night.  : )

Mother’s Day is very hard for some people

On By WendyIn Chronic Illness8 Comments
image from farmhousecountrystyle.blogspot.com

Every year since my mother died Mother’s Day has been bitter-sweet.  Everywhere I look people are telling you to get in touch with your mother, let her know how much you appreciate her, and how much you love her.  I’m sure there are many people who have lost their mother or perhaps lost a child, or for those who have mother’s who are not someone you really want to thank….you know they are out there….and this holiday is very, very hard for them.  Just as it is for me.

This year, Mother’s Day is especially hard for me.  This year, I expected to be a mother, a foster-mother yes, but a mother non-the-less.  That dream was taken from me this past year, and it won’t be coming back.  I’m okay with this decision, but it stings right now.

Mother’s Day is also very hard this year because I lost my little baby girl….yes, I’m talking about Sandy.  I know many won’t understand because she was a dog, but she was my baby for 19 years.  She was more of a constant in my life than any human.  And yes, it may sound silly, but most Mother’s Days I got a card from her and Max.  (yes, I’m not delusional, I know Stuart sent the cards, but her little paw print signed it….and I was her mommy.)   Stuart would joke around and make a special breakfast for me saying that our children insisted that he do so.  Yes, this Mother’s Day will be very hard.

This week Sandy’s memorial bench arrived. It’s sitting on our front porch, but we haven’t been able to inter her remains yet.  Yes, that will probably happen this weekend.  Her ashes are in a little box, this will be sealed in her special box (where we kept her stuff), with her special blanket, sweater, collar, just little things we think she would have like to have.   All of these things will be sealed in an airtight container, then sealed in the bench.    In our will we have a provision, when we die we plan to have our ashes mixed, Sandy’s ashes will also be mixed with ours.  (Max’s too, but since he is still alive, I don’t want to say things like that.)

Are we strange for caring so much about how our dog is cared for after death?  Are we the only ones like this.  I hope not.

But I’ve wandered away from the point of this post.   For all of those who find holidays like Mother’s Day, Father’s Day, Valentine’s Day, and even Christmas hard, you are not alone.  For all of you who now someone who has a hard time during these holidays, reach out.  Everyone needs to feel a little love.

Cochlear Implant coming soon….

On By WendyIn Chronic Illness9 Comments

On May 1st, I saw the audiologist and ear doctor and as my ear doctor said…..”Your hearing sucks!”

On my hearing tests the word recognition in my left ear was again 0%, and the right ear was 28%.   So it’s pretty obvious I don’t understand a lot of what’s being said.

On Friday, May 4th, I had the official hearing test to determine if I am a candidate for a Cochlear Implant.   Yes!  I am!!

Advanced Bionics – Harmony- Cochlear Implant.

Next step.  Insurance authorization.  It can take 4-6 weeks.  During this time I need to decide which device I want (there are 3 available, and each have some pros and cons…so a lot of reading and research).  Also, during this time I need to think of any questions I may have, and be prepared to ask them all.  However, I understand the surgery, how the cochlear implant works, how I’ll be hearing differently, and most everything I can think of right now.  I’m sure questions will arise though.

After the insurance approves everything, we just have to schedule the surgery…and it’s go.

About 2 weeks after surgery they will turn the device on.  I’ve been warned I may not hear much at first.  As time goes on my doctor thinks I will hear better and better.  If after a few months I feel I’m hearing better out of my left ear than my right, it is a VERY big possibility that by the end of this year I may be getting a second CI.   They say if you need 2 it’s better to get them close together if possible.

I was told that I am in a good place about all of this, I’ve only recently lost my hearing and people who get CI’s who recently lost their hearing normally do much better.

Right now, I’m excited at the possibility of hearing again…but cautious.   I know hearing through a CI is not the same as hearing normally.  I understand all surgery carries some risk.   So naturally I’m cautious.

But how would you feel if you were told that in just a couple of months you could go from 0% word recognition, to hearing again.   Yes, I know I may not understand everything in the beginning…heck, I may not understand anything….but it will come.  I will be able to hear again.

**In other news about me……   The migraines are so much better!!!  I had another round of steroids, and hopefully they have stopped the cycle.   (There is some doubt right now that I have Intracranical Hypertension.  If I do, it has not escalated, and the medication that should help didn’t help much.  The migraine treatments have helped much more.  My last lumbar puncture did show high CSF, but not very high.  Actually, it was pretty low in comparison to most people who have IH…..so we don’t have to worry about a shunt any time soon, hopefully, never!)

Word Cloud – #HAWMC 30

On By WendyIn Chronic Illness2 Comments

Today’s Prompt:  Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/

I did a little bit of a different take on this prompt.  I hope you like it.

Word Cloud Collage by W. Holcombe 2012, April

Personify Your Health – #HAWMC Day 28

On By WendyIn Chronic Illness1 Comment

Prompt for today….Personify your health. If your health focus were a person – what would they be like? Describe them. Visually, emotionally, physically, and personality-wise. What kind of person are they?

I’m again using one of the Bonus Prompts.  I liked this one more than the original prompt.  However, once again, I took a different take on it.  Recently I made a mask showing what I looked like on the outside to most people, and then on the inside I showed my true self.  I felt this answered all the questions put forth in this prompt, but with a little creative flair.

Some of you have already seen this, but I think it’s worth repeating, and for those who haven’t, I hope you enjoy!

Outside of Maxk. by W. Holcombe
Inside if Mask
by W. Holcombe
Mask Inside Top
W. Holcombe
Mask Inside Bottom

5 challenges, 5 small victories #HAWMC Day 27

On By WendyIn Chronic Illness7 Comments

Prompt for today:  5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

I think this is a very good prompt, and normally I’d be able to write it very easily, but the depression I’m feeling right now will make this more difficult.  (yes depression, but it’s deserved, I’m not clinically depressed at the moment.  I’ve had a lot to deal with, and the loss of a loved one, so I’m depressed.  Please no worries about my sanity. *smiles*)

A Difficult Challenge - Deciding on treatments.

5 Challenges – 5 Most Difficult Parts of My Health Focus

  1. The constant changing.  Things seem to be settling down, and wham I either get new symptoms or a whole new diagnosis.
  2. Making hard decisions.  Do I get the surgery that may help?  Do I try to live in the deaf world?  Do I take this drug even though it has some harsh side effects?  Do I get another opinion…..
  3. Keeping Positive.  OK, I’m not doing this very well right now, but it will get better.  I know it will.  (there see still positive! I just think it will take longer this time.)
  4. Risking leaving home.   This sounds like I’m afraid to leave home, and sometimes I am.  I have vertigo attacks with no warning.  If I’m more than 30 minutes from home and have an attack start, it terrifies me.
  5. How to keep my caregiver from burning out – How to keep my marriage strong through all of this.
A small victory, a night when I can cook.

 

5 Small Victories – 5 list for the little, good things that keep you going.

  1. For dealing with the constant changes.  I decided long ago that life isn’t going to be as I expected, so I decided to change my expectations.  I’m usually pretty flexible now at thinking, well this will change some things…what will it do, and how can I change to keep myself going.   (I will admit here, I’ve had a new diagnosis that has thrown me for a bit of a loop, the treatments are hard, the decisions are hard.  I haven’t quite gotten to the point where I feel I can think about my new expectations, I simply don’t know what to expect…but when I do, things will fall in order I’m sure.)
  2. Making hard decisions is still difficult, but I feel better about it because I know how to look up many resources, I know other people (on-line) who have the same issues I have so I can ask them what their experiences have been, and I’m very lucky to have a husband who helps me weigh the pros and cons and is able to look at things objectively.  However, he always leaves the final decisions up to me.
  3. Keeping Positive.  –  This hasn’t been a hard thing for me until recently.  I get a bit upset about things when things change…I’ll have a pity party.   Then I say “Enough!”  And start thinking of how I can stay positive.  I think of things I can still do.  I think of others who are going through the same thing, and know many of them help me see that it can be alright, and I want to help others know that too.   Yes, again, recently this has been hard.  I’ve had a lot dumped on me in a relatively short period of time.  I’ve lost a lot.  But I have no doubt that I will get back to the positive me.   I still believe in living every day you feel well enough to the fullest.  Even if that means just sitting out in the backyard.  Do not take things for granted.  And try to think of something you are grateful for every day.  Sometimes I write the same thing every day for a few days because that’s all I’m feeling grateful for that I can think of….but other days I can list many things.   (Toni Bernhard’s book How to be Sick, has helped me keep positive thoughts, and helped me to look at things a bit differently…I highly recommend it!)
  4. I risk going out of the house much more than I used to.  I’m still afraid of having an attack, but I carry an emergency kit with me all the time.  It contains emergency meds, water, wash cloths, small trash bags to throw up in, some Zip-Loc bags to put cloths in after being sick…..things like that.   I’m still a bit leery about going more than 30 minutes from home.   When I have an attack it is not pretty.  I feel humiliated and degraded.  I can’t stop throwing up, I can’t walk, I often have diarrhea, and cannot control my urine.  So I recently decided if I’m going on a longer trip, I will need to wear disposable adult incontinent panties….just in case.  If I have an attack in public, I do not want to be mortified by strangers seeing me defecate and wet myself.  I also always carry emergency medication for migraines.    These measures may seem a bit drastic to some, but it has made it so I can go out and not be terrified that if I have an attack I will be left with no help.  I also carry my phone with me all the time and it has an emergency button if I need to call 911.  I won’t be able to hear them, but I can tell when they pick up and tell them what is happening, and where I am.
  5. Making sure my caregiver takes care of himself, and keeping our marriage strong.  This has been a bit difficult.  My husband will not admit that caring for me wears on him.  He will say sometimes he feels weary then he thinks about what I’m going through and it goes away.  He also says it is an honor to care for me.  He loves me so much, he feels honored that I trust him so much with so much that he has to see.  He never gets grossed out, and always makes me feel loved, even during the most degrading moments.   We keep our marriage strong ….in many ways.  I thank him every day for the things he does, and when I can do things, I do.  I try to do little things he really likes, for example when I can cook, I try to make things I know he loves, and that is healthy.   In many ways my being sick has brought our marriage closer.  One BIG thing we do, we see a counselor together.  Sometimes we individually go in, but normally we are together.  We can say things there and it’s safe, and if we thought it might hurt the other, she can defuse it and make us understand where it’s coming from.  This has made a HUGE difference in how we treat each other.

We also take advantage of my good days. We even try hard on the bad days.  We always show each other that we care.  We curl up together, we massage each other (I admit I get more than I  give here), we go for drives together….and on special nights when I’m really feeling good, we go on a date.

 

This was easier than I thought it would be.  I do still have some positive outlooks still in me.  Yes, I’m depressed, but I should be, as I said before.  I think the only reason I haven’t been able to deal with the latest diagnosis (Intracranial Hypertension) is that I’m getting conflicting news from different doctors in my team.  And I just don’t know what’s going on with this….my migraine specialist thinks most of my symptoms are caused by migraines.  So the IH, may not be a big deal right now.  But the medication for it is still helping, so that says I should have it….but I’m confused.  So confused.  But I’m positive, it will get better.

So yes, this was a good prompt.  It made me think about my health issues, and it made me look deeper about things than I had been.  I’ve only been dealing with the overwhelming emotions, not the thought process behind them.

So thanks WEGO HAWMC team for this prompt!