What is going on???
Did we buy a house built on a burial ground? Are we to be cursed forever? I can have positive thoughts and depression in the same day…..yes I am feeling the bipolar bug a biting.
I wanted to write a memorial anniversary post about Sandy on the 18th, but I was losing consciousness at the headache pain neurologist office because I had such a migraine. I couldn’t even wear my hearing technology, I went in deaf, because sounds hurt so much. I had my sunglasses on and a hat to block out as much light as I could. Stuart took care of everything. I passed out twice, once I didn’t know where I was when I came to….and it had only been seconds. I could barely talk, and I can’t even hear my own voice.
It’s those days that make it hard to find the positive. And to top it off……
Stuart got laid off the day before. Out of the blue. Company got some new investors and started restructuring….’nuf said.
I probably have a ton more to say, I have hit some posts here and there….I’m sorry. I still have 400 emails in my inbox. If you have emailed me…I promise I’ll get to it….or resend it please…who knows what is lost in that pile.
My head is hurting so much.
I must get off the computer. I’m not on here every day. I hope after getting back on Botox on the 7th, it will get better…may take a couple of months of treatments.
thank you all of sending healing thoughts my way. I send out health and wellness thoughts to you all each night. I breathe in your pain and out healthy thoughts.
(oh and don’t worry about the Bipolar Bug…I’m seeing both types of exterminations soon…yes I know it can’t be killed, but they can get it more under control. I don’t want to feel like I’m just waiting to die. But days like my trip to the neurologist, I feel like that….or I did. I’m so confused about feelings right now and I know not to trust them. Also hormonal time…so my emotions are being toyed with…as long as I know this, I can handle it.)
(I wanted a cool graphic for this, but just didn’t feel like drawing….in too much pain.)
Thank you to all who have commented here and I haven’t been to your blog, or at least not very often….I care more than I can say.
I got lost!
Flying Brain – photo from deviantArt.com created by Pixelnase
Throughout my journey having chronic illnesses I’ve fought hard to not allow my illnesses to define me. Yes they are a part of me, but they aren’t all of me. I worked hard to keep some sense of normalcy in my life…and to try my best to keep true to me.
I feel after everything that happened this past year….and not all of them had to do with my illnesses…I lost myself. I became the sick person. I stopped trying to be me. I stopped posting regularly, I stopped doing my art, I stopped cooking (partially because I had a dizzy spell while cooking and almost hurt myself, but I’ve been to scared to start back)….I’ve been living in fear and self loathing.
2012 was one of the hardest years I’ve lived through, (topped only by 1993, the year my mother died). I had 2 new chronic diagnoses, my dearest friend and constant companion of 19 years died (yes I am talking about Sandy), I had contact from someone I’ve loved unconditionally who I haven’t heard from in years and the correspondence was filled with hatred….just true and deep rooted hatred. It would be hard enough for me to deal with anyone hating me, but this person….well the wound cut deep. It’s so hard to explain. I don’t remember a lot of my life before I got my bipolar stable, and I’ve changed so much since I met and married my husband, and since I’ve been sick. I love me…me as a person.
But me as a person was lost. I didn’t realize it until we came to Tucson and I got so sick. Not just my normal chronic illnesses, but more and more. I had a cough that wouldn’t go away…I’m still coughing some. I finally saw the doctor, and I had bronchitis and Asthma. I was born with Asthma, so I’ve known it was there, but supposedly I’d “grown out of it”. I would have an attack if I got around someone with perfume on, or someone smoking, or around things I’m allergic to. But now, I’m dealing with it every day. And unfortunately, I had more vertigo attacks in November than I had the entire year combined. I’ve also been having a huge problem with my GI system. I know my food issues and I’m careful, but things sneak in….and I had no idea….still I’m having bowel issues. And I’m gaining weight. I’m back to being 5 pounds from my largest weight. And that’s way too much for my short body.
It has just been too much. More illnesses. More conflicts to deal with. More being stuck in bed. I got lost and didn’t even know it.
I was lying in bed recently and realized how much I hate me. No, I don’t hate me as a person, I actually like the person I’ve become. Adversity really does create good people. (and I think I am a good person) But, me…my body….I hate it. I’m larger than I want to be, or should be. I have no energy, I’m sick ALL THE TIME! I feel my body betrayed me. And I don’t want anyone to see me when I’m ill. When I do actually get to see someone, I try my best to look my best. I know this probably causes a bit of confusion for people, I don’t look sick when they see me, so how can I be so very sick. I remember one day when friend came to visit with her 2 children. I loved seeing them, but I started to feel very worn out and dizzy before they left. I tried so hard not to let them see. Soon it was time for them to leave, Stuart and I walked them to the door, arm in arm….and when the door was closed, I collapsed. But I couldn’t let her see. I think I’m afraid if people see how sick I am they will shun me, and I will lose all my friends. But really, I think I’ve lost most of them anyway. I’ve hidden away. And I don’t think I could stand for someone to see me really sick. I’d rather be with just Stuart than for others to feel uncomfortable because I’m sick. Gaining weight hasn’t helped. People expect sick people to be underweight. Instead I’ve gained about 60 pounds.
So, now that I know what has been happening to me, I am determined to get me back. The inner me. My blog was very important to me, but I allowed someone to scare me away from it. I can’t do that. I have to write and reach out to those who can help me and those whom I may be able to help. This is such an important part of me. My art has been an important part. I wanted to have something I did consistently….but I’ve failed…I need to get that back. I need to do something that is productive and useful. I’ve felt like a useless burden for too long. I found out about a few charities in my area who knit or crochet blankets, scarves….ect….for needy. One charity that really spoke to me is one that donates to foster children, so they will have something special that was made just for them. (as many of you may know, Stuart and I had planned to be foster parents but ended up not being able to because my illness got so much worse). Foster children hold a special place in our hearts. The charity I found makes items for foster children in a neighboring county, at some point I would like to see the same type of charity started for the county we live in.
So here’s the beginnings of a plan for me. Begin doing something that will make me feel more like I’m a contributing member of society, learn to love my body no matter what size it is or how sick it is, stop listening to old ghost from the past and hope they can move past their hate and find a happy life, learn more about dealing with my new diagnoses, and learn American sign language.
I didn’t mention, I haven’t been able to hear out of my right ear…with my hearing aid…for about a month. So we really need to learn ASL. We will be starting a class here in Tucson next week. It is a beginning conversation ASL class. We will miss the last couple of classes, but feel it will be worth while. This is through a Hard of Hearing and Deaf group, many of the members are deaf or severely hard of hearing, so I shouldn’t have a problem with not being able to hear in class. (Stuart talked to the teacher and she assured him it wouldn’t be a problem, and many people who have Cochlear Implants are members there too.
I’m so Grateful for my Emergency Kit!
I always hoped I’d never need it. When I made up my emergency kit it was more a peace of mind thing, not a real thought that I’d ever need it. On Wednesday, I was so grateful I had that emergency kit! (TMI -This post contains information that may be too much for some people.)
The day started off so wonderful. You can see that in the last post….but later that afternoon I was hit with an attack, and I was in public! We decided to go out and check out a few stores that carry allergy friendly foods, but we were hungry and thought we’d grab a bite to eat. (yes I know, too much food out…too much sodium! But I had steamed chicken with vegetables and rice, no sauce….I ordered smart!) We were sitting in the restaurant and Stuart pointed out something to my left and over my head, I glanced at it and everything spun around. It scared the mess out of me! First I started to panic, then I felt it was slowing down. I thought it was Migraine Associated Vertigo and would pass after I took my migraine medication and emergency pills. Boy was I wrong! I took the pills and things didn’t get better. I was getting sick. Very sick, and the world was spinning faster and faster. I handed Stuart my purse and asked him to get my emergency kit. I needed to cool down, and I needed something to throw up in (just in case). I have cold packs in my emergency kit that turn cold when you twist them…or hit them really hard. This was a wonderful thing. I needed to cool down my core fast. We left the restaurant as soon as I could stand. It had slowed down so I thought the medication was finally working and we could get home with minimal discomfort.
I was VERY wrong again! We drove a ways fairly well, then the spinning got so much worse. I couldn’t stand the car moving. I asked Stuart to stop the car, he couldn’t stop where we were, and I started to panic….”Please just stop the car!” It was torture. I was actually screaming before he could get stopped. He stopped. Later he told me he was not in the best spot. It was pretty public and he knew I’d feel uncomfortable. Frankly, I didn’t care, nor did I notice. I was throwing up (thank goodness for those little garbage bags I packed in the Emergency kit), and I was losing control of my bladder. I was devastated. We were in Stuart’s father’s car, it had just been detailed….I mean like an hour before we left in it….it has leather seats! How could this be happening to me, in my father-in-law’s Lexus? (luckily it was his older car, but still, leather seats!!) Stuart swears when he went to clean it up, there was nothing on the seat, and no vomit anywhere. I did miss some the last time and got it on me. I’m so glad I was wearing a reusable pad, I use them for my menstrual cycle, but I also use them most of the time in case I sneeze or cough and pee a little.
We got home, and got me inside. I collapsed on the couch and passed out. I woke up an hour later gagging, but didn’t throw up. My body was spasming, it feels like I’m convulsing (not that I’d know what that feels like first hand), this lasted what felt like hours. I got very scared. I was having a hard time breathing with the spasms, and for the first time during one of these attacks I was afraid of dying. Then i passed out again, but only for a few minutes. When I came to, I decided I wanted to try to get to the bed. We succeeded. Not without much difficulty, but I was out after that for a few hours.
I know most of you have heard my horror stories of my vertigo attacks before, but the main part of this recount is how much my emergency kit helped. In it I have cold packs (to cool me down), small trash bags (to throw up in), large Ziploc bags (to put the soiled items in…and bags that have throw-up in them), wash cloths (to wipe my mouth, and help cool me down when they are wet), extra meds (we always have my emergency pills on us, this is an extra safe guard and it has more meds than I usually carry), a card explaining what is happening to me…and I keep a water bottle with me (normally this is just to drink from, but when I’m having an attack it helps to wet wash cloths and I need to rinse my mouth).
I will never think I can go without that kit again. I was recently thinking it was taking up too much room in my bag, no more! If I go out with nothing else, I will have my kit!
I’ve been working on this post since Thursday, the day after it happened. I’ve had days and days of extreme disequilibrium. I couldn’t move my head at all without seeing the world move. It was like it just didn’t keep up with my head….strange. I just started walking some unaided yesterday. Today I feel better and can get around by myself, but I still feel a bit wobbly. I’m pretty sure this wasn’t just a Meniere’s attack. My hearing in my right ear did drop significantly, and hasn’t returned to its normal level…that’s weird for me, normally after the attack ends the hearing comes back…at least almost to where it was. We think I had another spinal “blow out”, and my Cerebrospinal Fluid Pressure (CSF) dropped. Stuart suggested the first night after the attack to not take my medication that controls the high CSF, it’s a strong diuretic and I couldn’t afford to lose any more fluids. But I started taking them again the next day after I was sure I was well hydrated. Then things didn’t get better. I was scared that I would feel that way all the time. I was having a big pity party for myself (sorry I didn’t invite you all). Yesterday morning, Sunday, I woke up feeling much better. I took my CSF medication, then I got up and fixed myself some breakfast. After making breakfast I turned and the world spun, dang-it! But it was at that time I realized my CSF pressure was too low. I had all the symptoms…the wooshy head, a headache when standing..ect. I went back to bed and lied down flat and the symptoms lessened and went away. Ah…yep, low CSF. So yesterday I spent the day lying flat. I’m holding off on the high CSF medication until I get signs of high CSF, then I’ll ramp back up on them.
Today I’m feeling much, much better, but still weak. My main goals for the day are a shower, and finishing this post…not necessarily in that order.
I’m sure I’ll feel better and better. The weather here is still gorgeous. We had an overcast day, but it was still nice. Today we have the windows open and are enjoying the fresh air.
Hard to Get Started Again…
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
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. : )
Personify Your Health – #HAWMC Day 28
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
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
- The constant changing. Things seem to be settling down, and wham I either get new symptoms or a whole new diagnosis.
- 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…..
- 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.)
- 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.
- 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.
- 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.)
- 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.
- 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!)
- 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.
- 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!
Pinboard – #HAWMC Day 16
Today’s Prompt: Pinboard. Create a pinterest board for your health focus. Pin 3 things. What did you
pin? Share the images in a post and explain why you chose them.
I chose to pin a few more than 3 things, and probably could have done more. However, I only pinned photos and artwork I created. I chose these images because I felt they were closer to me and expressed what I wanted to say many times.
Here are the photo’s I shared on my Pinterest Board, titled, My Illnesses….pluses and minuses.
Wendy just write…. #HAWMC Day 12
Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!
(written April 5th)
image courtesy of http://www.thechicagobridge.org/
“Wendy” just write, don’t stop, don’t edit. Post!
Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.
Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer. What can I offer. I can’t even hear them to talk to them. I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests? I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!
This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!
I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!
I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.! I was so busy….I didn’t think it would end…
After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.
I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece. But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.
Now I’m falling apart….and I’m angry at myself about it!!!?????
I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad. I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me! I’m angry I can’t lose weight….I’m MAD AS HELL!
I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that. However, I know me, and I will. I’ll get it together, and get myself another lease on life. Life is good.
I have such a good husband. It can’t be all bad. I must think of the good days.
Best Conversation – #HAWMC Day 8
Today’s Prompt is Best conversation I had this week. Try writing script-style (or with dialogue) today
to recap an awesome conversation you had this week.
I had an entirely different post written for today….then Saturday afternoon Stuart and I were out running errands and decided stop in a fast food restaurant for a drink and a snack. (not the best place for a snack, but dinner was a long way off and we were both hungry!)
We ordered our food, got our drinks and sat at our table. We were just chatting and planning the rest of the day waiting on our fries. An elderly lady who smelled of Channel No. 5 walked up, she was dressed in a floral dress, with a bright sweater, costume jewelry that was stylish many years before I was born, and lipstick that mostly covered her lips. She was delightful!
She smiled broadly and asked, “Are you married?”
I looked at Stuart and smiled, we both shook our heads yes, and answered, “Yes, yes we are.”
“Oh! I thought so! You just look at each other as if you are! My husband and I have been married for 58 years!”
Stuart, “Oh, my! That’s admirable, I hope we can make it that long!”
Me – “How amazing, you look so happy!” “We’ve only been married for 8 1/2 years.”
Dear Lady – “That long?? I thought you just got married the way you look at each other! You look like you are still on your honeymoon!”
We looked at each other and smiled, then looked at her and both agreed, it still feels like we just got married. She was thrilled….and so were we.
there was a bit more gushing, thank you’s and congratulations and she disappeared as mysteriously as she arrived. I never did see her husband, he was behind me. I kept thinking, I wonder what it was about us that made her come up and do that…..now, I keep thinking…I don’t care. I’m so happy for such a chance encounter with such an amazing woman.
For that moment…I was not a sick person. My husband and I were simply sharing a moment, acting as we normally would, and it sparked something so deep in this marvelous woman that she felt compelled to come and tell us how in love we looked. Stuart said that I can never tell him that he doesn’t show me how much he loves me, but I wouldn’t. He does, every day. And on a normal day, we do hold hands, and gaze in each others’ eyes. We laugh with each other, and sneak a quick pinch on the butt….is the honeymoon over….truthfully, we never had a real honeymoon. I can tell you, when we talk about our wedding we still feel like it just happened. We get all mushy about it. I can also tell you, every day I love my husband just a little bit more.
First Dance at our wedding.
Sept. 3, 2004
