Tag: family and chronic illness

Weekend Warrior

On By WendyIn Chronic Illness, Headaches, Migraines11 Comments
One of the last of the wildflowers 2019 Tucson – W Holcombe

I missed writing yesterday, it was such a full day I just didn’t get it in.

Before my painting class with my niece I decided to take a Maxalt, and a couple of toradol with a little caffeine to see if I could get this migraine to a level where I could not only be present for the day, but also enjoy it a little. The pain did get to a more tolerable level, and after an hour I took the 2nd dose of Maxalt (if the pain doesn’t subside with a first dose you are supposed to take a second, I normally don’t because I don’t want to run out of my medication too soon, but on special days I will), after the second dose the pain was reduced more! Yay. The class was fun. I was sad because I cannot understand most of what my niece says, she speaks very quietly most of the time and does not move her mouth much at all. I’d love to be the aunt she could whisper too and tell secrets, but I can’t hear most of what she says. It makes me so sad. It did bother me that I did not get a thank you at the end of the day, I wasn’t surprised, that saddens me too. I do think she had a good time, though.

After our painting class we went out for pizza with the family. It’s always a mixture of emotions when I spend time with Stuart’s family. I like the feeling of family, but it can be a bit too much for me all at one time, and Stuart’s sister is very boisterous. I can only take her in small doses. We had to go back over to their house for some things after lunch so my time with her was close to hitting it’s limit before we left, and I was starting to have more pain.

When we left I was still feeling pretty good though and decided I did not want to waste it. I knew I might be pushing it a bit too much, but it’s a good chance that the next day could bring increased pain no matter what I do, so when I’m able, I’m taking advantage of it. I found out about this little clothing store that carries a style of clothing that I like so we went to check it out. Funny thing, I got 2 dresses, and neither one of them are in the style that I went there looking for. ha!

After that we were both bushed, but we wanted a treat so we got frozen yogurt before we went home and spent the evening watching baking shows and old Dr. Who’s.

Today I woke up feeling pretty good. Ate breakfast, picked up a few things around the house, then set out in the backyard to poopy scoop, something I haven’t done in a very long time and I’ve been feeling very guilty about it. I walked out and saw that the little rake and pan that I use to do it had been moved. “Oh no, my landlord felt the need to pick up my dog’s poop!” I felt so ashamed. I told Stuart and he said he wouldn’t feel bad if someone did that he’d just thank them. Ugh! I thought well no wonder stuff just accumulates on the porch and things are not put away….he feels no shame about things. Our back porch looks awful, he should be ashamed. So I told him so! Then I went out there and cleaned up the back porch! I moved and rearranged plastic totes (they are empty), I swept down the cob webs, I swept off all the totes and pool floats, I swept the porch (boy was there a lot of little mesquite leaves on there!), I wiped down the grill, and I got Stuart to get rid of the 2 cardboard boxed that were back there. Now my back porch looks all clean and organized, and we look like we take pride in our home. I am absolutely amazed at how much I can do when I’m mad! The amazing thing is, I could sweep like that and it didn’t hurt my back much at all, but have me stand at the kitchen counter and try to bake or cut up veggies and it hurts so bad it brings me to my knees.
(Yes, I know the whole thing about feeling shame sounded snarky, I felt snarky at the time. I shouldn’t have gotten mad. I know a lot of my anger actually came from feeling that I can’t do my share to help keep up the house and the yard. Stuart and I talked about it, and he says he understands, I think he does, and I still think he needs to feel a little shame now and then. lol)

After all that adrenaline flew out of my body I fell into a heap in my chair and crashed. Then after about an hour I started seeing the world vibrating and going dim, I suddenly felt high but I hadn’t done anything to cause it, then the pain hit; a vestibular migraine had started. It wasn’t quite lunch time when I curled up ready for the end of the day.

I had a very full weekend, I got a lot of things done and had some fun, now for some sleep.

Advertisement

It’s hard to come back

On By WendyIn Chronic Illness13 Comments

I haven’t meant to stay away for so long, it’s just happened. I’ve simply been feeling a bit reclusive, withdrawn, just wanting to keep myself to myself. I haven’t felt there was anything wrong, maybe I just needed a recharge. Maybe it’s because my husband has been sick twice in the last month. First he had a bad cold that set him back a week then less than 2 weeks later he came down with an awful bug that put him in bed for another week, (in between that I had a cold). It’s hard when the sick need to take care of the sick, but I think I did a pretty good job of it. I even went to three doctor appointments all by myself.

I actually felt like I was accomplishing quite a bit, but something has been off. I didn’t want to talk to people. I didn’t even realize how much time went by where I didn’t talk with people, that was a weird thing. People I normally talk with nearly every day, suddenly I hadn’t talked with in a week or more. Yeah, I’m still not really sure what has been up with that. I missed them, but I felt like I had absolutely nothing to say and felt awkward trying. I’m feeling awkward even trying to make sense of it. I simply felt I needed to be alone.

Now, I don’t know what has been going with anyone, my friends I normally talk to regularly or my blogging family. How could I have just backed away from everyone as if I don’t care. I do, I care a lot. I can only think of one thing that happened that may have sparked this, I made a comment on someones blog that hurt them. I never meant to. I thought it was encouraging, but it was not taken that way, and that broke my heart. I would never do anything to hurt another person, especially one of my blogging friends and family. However, I never meant to stay away, it just happened. I want to come back, but I’m not sure how.

I do have some news to share. Some good news about a new neurologist and some not so good news about us having to move before we planned. All things I want to share soon.

So, do I feel more connected to the world now? Not really.

New look and a Mini Me, Update

On By WendyIn Chronic Illness9 Comments

I hope everyone had a magical holiday season. I hope you didn’t kill anyone. I know I wanted to a few times. Luckily it ended when it did.

I’ve started a new look to my blog, I will probably change the photo soon, but I wanted a better font and line spacing, especially with the new way WordPress is making me format post now.

Thought I’d give you all a little health update since I left things kind of up in the air. My infections seem to be all gone, or at least almost all gone, no worries about that anymore! Yay! But my tests showed that I have an obstruction in my kidneys. Yes, I said, “kidneys” plural. I don’t know what is going on. I had an urgent referral to a nephrologist, but they seemed to not think it was urgent since I don’t have an appointment until January 7th. I have been told that if there is a change in my symptoms to get the ER immediately. Okay, I can do that. I’m thinking this was caused by inflammation from the infections and it will clear up, possibly on its own? (one can hope) Maybe that’s why they weren’t worried about getting me in there sooner? I did have a pretty severe pain yesterday, I decided to drink something other than water and very weak decaffeinated tea and my kidneys screamed in response, so did my bladder. Maybe it’s not just inflammation?

We had a very quiet Christmas. We had breakfast with Stuart’s father, and we watched holiday movies all day. I ate entirely too much the past couple of days. It’s obvious there is something going on there. I simply can’t stop eating. Either this new medication is making me crave all kinds of crap, or I’m not dealing with things as well as I think I am. Maybe it’s a little of both? All I know is that if I’m not eating, I’m thinking about the next thing to eat. (if I’m honest, I know I’m not dealing with everything well, I still have this underlying anger that wants to break through often. My husband has the patience of Gandhi. I don’t know if I would put up with me for this long. He says it really hasn’t been that long, it feels like a life time to me.)

We ended up canceling our rescheduled Christmas dinner too. That has been hard on me. Not really that we had to cancel, but that it is going to be very hard to plan it now. and the decorations would have made it very festive, what am I going to do with that empty spot in my corner where the tree was? We moved the furniture and now there is nothing to put there. hmmm. Luckily I like minimalism. We decided we just shouldn’t try to do all of that when we don’t know how I’ll be feeling. So I’m waiting until after I see the kidney doctor before rescheduling. We decided to make this dinner much more laid back though, spaghetti with salad and bread (all gluten free of course). Everyone was all on board with this too, amazing! Most of the time I’m hit with…so and so won’t eat that…it’s hard when you ask and ask what people can and can’t eat and then when you make plans you hear that it’s not right. This might be the last dinner I plan. I now understand why they all go out to eat so much.

There is still so much drama here that it makes my head spin. I’ve just been lying low and keeping to myself. Stuart worries that I need to be more social. Maybe when I feel better, but right now, as long as we get out for a little bit once a week, I’m good, just curled up in my chair with heat on my abdomen and/or back, I’m good to go for now. I’m worried about him, he’s been awfully depressed lately. I think this move took a lot more out of him than he wants to admit too, and he’s worried about me…darnit.

Well, it’s getting late and I find myself rambling so I’ll close for now. I do find myself rambling much more lately, can’t stop talking, a sure sign that I’m still dealing with mania, but I don’t like this new medication. It has too many side effects and too many things that can go wrong. I hope there is another option. I see that doctor late January, she took a lot of time off for the holidays and I had to cancel my last appointment right before she went on vacation because of the kidney stuff. I really need to see her though, we called and I’m on the wait list, hopefully an appointment will come available. We also asked for orders to get my blood drawn, since you are supposed to do that within the first month of being on this medication to make sure your live is okay. Got that yesterday, will be having it drawn tomorrow.

How’s everyone out there? I’m looking forward to having some of these things resolved soon so I can start the new year on a healthier note. I does seem that I either go out of a year feeling like crap or start a new year feeling like crap. Within the first hour of this year I had a cluster headache (and every day since) that’s a sure way to start the year off with a dud. 😉 I’m sure that it will only go up from here.

I will just stop and be thankful for all the support and love I have.

and just breathe.

Canceling Christmas and that’s okay.

On By WendyIn Christmas, Chronic Illness7 Comments

Today we are officially canceling Christmas dinner. We were supposed to be hosting dinner for the family at our house this Saturday night, but plans needed to be changed because of my health. It was hard for me to admit it at first, but finally I realized, even if, by some miracle, I could get it all done, I would not be well enough to enjoy it. The probability that I’d end up in bed during the whole thing was high. So, as I prepared to have a “talk” about cancelling Christmas with Stuart, he proceeded to tell me that he felt we needed to do so. So glad we are a team.

For years now we’ve worked at making Christmas our own. We stepped back from the hustle and bustle and spent time together doing our special things. This year, we are in much closer proximity to his family and I really wanted to do something special for his dad, so Christmas dinner was planned. Then I got sicker and sicker with a UTI and more, and suddenly this Christmas started to feel like an albatross around my neck. I desperately wanted it, but my health simply did not agree, and I’ve come to understand that it’s perfectly okay to cancel plans when you need to. If anyone is disappointed or upset because of this change of plans, then I’m not sure I’d want them at my house anyway. (We are going to try to do the dinner on the 29th, but if I can’t, I can’t. Playing that one by ear.)

I feel like this whole experience has made me get back to my mindfulness practice, and Buddhist studies (I consider myself Buddhist inspired). Letting go of the plans for Christmas, not focusing on what may be with my health, just living life moment to moment as best I can, that is where I like to be, I feel like I lost that somewhere along the way.

Mala Beads.

For the past year I’ve had this bracelet that helps you meditate, it is based on Mala beads, but on a much smaller scale. Mine has 21 beads, where a true Mala has 108. Mala beads are used to count mantras when meditating, I think if it kind of like a Rosary. I have used mine at times when I have a few moments to meditate, I simply hold a bead between my fingers and take a deep breath in and out and then move on to the next bead. Sometimes I’ll focus on counting, or a single word or phrase. It has helped me with anxiety and being centered. I realized just how much I had gotten away from my mindfulness practice when I stopped using my beads. Recently I had a mammogram and I had to take my jewelry off, I had almost everything off already, Stuart was holding it for me, but I had my beads on. I had to take them off, so I put them with my clothes. When I got home I realized I didn’t have my beads. They are very inexpensive and don’t look like much, so no one would have saved it. I was devastated. I had just started using it again and it was helping me through this tough time, and suddenly it was gone. I ordered a new one, but it was different. It didn’t feel right. This week Stuart surprised me with a new one just like my old one. I will be using it often now, I’m so very glad I found this way of simply letting the world go for a little bit. I often get anxious when meditating because I can’t tell how much time has passed, by counting my beads, I have a know that completing one round is a good amount of time, I used to be afraid I’d look at the clock and only a minute had passed, this is a perfect solution.

Another tool I’ve used for a long time that I’m using more often now is chanting. This is not for everyone, some find it much more religiously centered. I don’t really. I do try to practice the Buddha’s teachings, but I don’t feel I really know enough to call myself a Buddhist. I try not to talk about religion on my blog, I respect one and all. I feel we all have the same basic beliefs, we want to be happy and want the same for others. In other words, do good and good comes back to you. I think you should do good no matter what, but again, I’m getting off subject. (and at this time in I’m not sure how many people agree with any of that)

About the chanting. I learned a chant when I was taking yoga, many moons ago, and it stuck with me. Whenever I have a bad spell Stuart and I will chant this chant.

Oṃ bhūr bhuvaḥ svaḥ

tát savitúr váreṇyaṃ

bhárgo devásya dhīmahi

dhíyo yó naḥ pracodáyāt

Translation:

 (O) Supreme one; (who is) the physical, astral (and) causal worlds (himself).

 (you are) the source of all, deserving all worship

 (O) radiant, divine one; (we) meditate (upon you)

Propel our Intellect (towards liberation or freedom)

I can’t really remember how to pronounce the last two stanzas, but we know the first two by heart and I find them very comforting when I’m in a lot a pain, or having vertigo so very bad. It doesn’t really matter to me what the meaning is, it’s the chant itself that helps. When in pain I chant this and sway back and forth, it honestly helps. Since I had the akathesia side effects last Spring I rock myself to sleep. I simply cannot be still. Since I’ve been so sick, I find myself repeating this mantra every night. That or the Lord’s prayer, which is kind of funny to me.

The next 2 paragraphs are all about my current health condition, feel free to skip it, but if you are interested, here goes:

As many of you will know from my previous post, I’ve been fighting a UTI since late November. I’ve been through 3 rounds of antibiotics and I had another infection from a cyst removal on my scalp that still hasn’t healed. (that procedure was done the third week of November, over a month now). You may also recall that I’ve been going through a Bipolar mixed stated mania phase, and had to change my medication a couple of times. Yesterday I saw the doctor again. I was running a fever, but not incredibly high. My pulse and BP were a little high, nothing worrisome. I have been having severe stomach pain with retching (very little vomiting, just heaving horribly) and the nausea has been so severe, I just can’t express that feeling. My bladder and back still hurt. She also checked my wound and it is still draining, but it’s yellow now. ewww. She’s a little concerned about the possibility of sepsis, since I have infections in 2 places that haven’t healed, but I don’t have that high of a temperature and I should be either vomiting or having diarrhea, and I’m having neither. I’m had my blood drawn just in case. I also had a urninalisis, so far it shows that my UTI is clearing, but I have blood in my urine, so I go to have a kidney/bladder ultrasound tomorrow morning. (At 11:30 in the morning, after no food or drink for 8 hours then drinking at least 32 oz of water before the test without peeing. Talk about torture.)

She thinks this has all probably been caused by adding too many medications at one time and they didn’t play nice together. Stopping the antibiotics will hopefully set it straight. Of course, that wouldn’t explain the blood in my urine, but why worry, it is what it is.

*the first image was created using imgflip.com the second image comes from https://chopra.com/articles/the-benefits-and-uses-of-mala-beads I believe each are open source photos.

Mindfulness Monday – Life as it is

On By WendyIn Chronic Illness, Mindfulness, Quotes14 Comments

20181029_174524

“What would it be like if I could accept life

– accept this moment –

exactly as it is?”

– Tara Brach

 

“How you look at it is

pretty much how you’ll see it.”

 – Rasheed Ogunlaru

 

“Every experience,

no matter how bad it seems,

holds within it a blessing of some kind.

The goal is to find it.”

– Buddha

 

“Don’t let life harden your heart.”

 – Pema Chödrön

 

Today I searched for quotes to help me simply accept life has it is right now, and change my thought process about it all.  I promised someone recently, “Don’t worry I won’t let her steal my joy”, but by the time I said that, I realize I had already allowed that to happen.

The serenity prayer states, “God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference.”  My biggest problem right now is that I don’t feel I have the wisdom to know the difference.   I’m spinning my wheels trying to figure out what I can change, and if I can’t change things, how can I just accept that?  What blessing do I find in it?  The greatest comfort I have right now is knowing that everything changes.  This is just a blip in my life, it will change…..right??  Please tell me it will change.  Between the stress in my personal life and the stress of politics right now, I just feel overwhelmed.

The holidays are coming up.  I was really looking forward to having the holidays with family, but it is way too complicated for me.  I’m ready to run away and hide for the next couple of months.  Anyone want to come with?

 

*photo by W. Holcombe, all rights reserved.  October Sunset in Tucson.

It’s challenging

On By WendyIn Chronic Illness12 Comments

I have no idea where to start this post.

I guess I’ll start first by apologizing for having to have Lorraine do Mindfulness Monday for me again this week (thank you Lorraine, you awesome) I have been feeling like a fraud.  I have been talking about mindfulness for a few years now and I simply haven’t been able to live the life.  My life seems out of control right now and I haven’t been able to accept that this is the way it will be and be okay with it.  My meditation practice has never been as regular as I’d like, but lately it has been non existent.  Why is it when I need this the most, I have been unable to simply let that shit go.

Living  in close proximity to family has been more stressful than I thought it would be.  We haven’t been able to help my father-in-law as much as we thought we would.  He simply wants to keep doing as much as he can in addition to caring for his wife, so he has some semblance of normalcy.  We do try to see him at least once a week, but that doesn’t seem like enough to me, and we haven’t been seeing as much of M as I thought we would.  She has no idea who we are and I’m afraid that is making her a little frustrated.  I’m not sure about that though.  She is very pleasant to be with, she talks and talks, I just wish I could hear her better.  Now that I’ve been more symptomatic, it’s hard to do much to help anyway.

My hearing loss has been much more of a challenge here than I thought it would be.  Not only do I have trouble hearing M, I can barely understand anything my niece and nephew say, and my new psychiatrist…well, let’s just say, I won’t be going there without Stuart with me to help translate.  She is very soft spoken and has an accent so she enunciates her words differently, it makes it extremely hard to read her lips.  I wish I knew sign language so I could request an interpreter.  I could request CART, but that’s really hard to set up, so it could make it very hard for me to get an appointment when needed.  I also don’t understand my headache doctor, he also has an accent, he talks fast, and really has no idea how to talk with someone who has profound hearing loss.  That kind of amazes me.  This city has a large elderly population, that means there are more people here who have late onset hearing loss, doctors should know how to communicate with us.  Oh who am I kidding, many doctors don’t know how to communicate with anyone, hearing or not.

The vertigo has gotten worse.  Ironic thing, I just received a letter saying my Medicare benefits are being reviewed, right after that my vertigo started going crazy!  When I finally got Medicare my symptoms started getting better, not immediately, gradually, but it was better.  Was it the extreme stress of feeling like a burden, and the fear that if something happened to Stuart I wouldn’t have insurance or any income, causing my vertigo to be worse?  I have no idea, all I know is that I’m having vertigo again, often, and I’m really upset about it.  I’m even using my walker again, not every day, but I’m definitely getting use out of it again.  I think buying a car was tempting fate, the last time I got a car I got worse….you can see how my mind is just spiraling.  I’m so tired.

To top it all off, I’ve been dealing with some of the worst rage episodes I’ve had in a long time.  I started taking estrogen about 2 weeks ago for menopausal symptoms, I’m thinking that could be it, but since I have Bipolar Disorder it always concerns me.  I do have a call into the doctor, let’s hope we can figure this out before I kill someone.

Speaking of my mental health, my psychiatrist had gene testing done to help determine which drugs are best for me.  The results are very interesting.  I want to share a lot of that with you, but this post is getting long, so I’ll save that for another day.  If you’d like to read more about the test I had, it’s called Genesight, here’s the link to their site.   https://genesight.com/

My back has started seizing again, the muscle spasms stop me from doing a lot of the things I’d like to.  Like baking!

But I was able to do a little celebrating for Halloween (after a complete meltdown on Halloween day, the night turned out pretty good.)

Here’s a few photos of my makeup, one from a festival we went to on Friday and the other for Halloween night to give out treats.  Halloween night wasn’t very inventive, it was the end of a very long and emotional day, so my makeup was not what I had planned.

Friday night at the Pima County Air and Space Museum
Halloween night at home

 

I hope your Halloween was a hauntingly good time.

I’ve been having a hard time writing lately, I may be writing more journal type post, I think I need to get more of this stuff out.

 

 

Life, it changes in an instant

On By WendyIn Chronic Illness, family16 Comments

hands-578917_1920

My husband’s stepmother (M) was on her way to a basketball game when she tripped and fell face first on cement.  In that instant, our lives changed forever, we just didn’t know it yet.

After the accident the only real damage evident was the loss of all her front teeth.  She was recovering and was going to be fitted with a bridge, but during her follow-up with her physician to discuss other symptoms she was having, they found that she had dangerously low sodium.   Low sodium can cause swelling, for the most part that’s not dangerous, but “when the cells of the brain swell, it’s much more detrimental.  Because the brain cells are so tightly confined by the skull bones, even a small amount of swelling can be dangerous.  This is particularly dangerous when sodium levels drop rapidly, causing brain cells to swell rapidly, Without immediate medical treatment, this rapid swelling could lead to coma and death.” (1)   M was quickly admitted to the hospital, however, she was nearly comatose before they could lower her sodium levels.

The severe drop in sodium caused havoc with her body, we knew she would require physical rehabilitation.  However, when her sodium levels returned to normal, it was obvious there was something still wrong.

M was having severe issues with her memory.  She could read, but she couldn’t comprehend what she was reading.  There was further testing, and it was found that she had a tiny subdural hematoma.  (later is was determined that the hematoma was worse than initially thought)  There was also talk of Alzheimer’s, as this runs in her family.  (from what I understand she was having minor memory issues before the accident)

Soon it became apparent that M would need long term care.  She is not expected to make a full recovery.  She will be entering a long term care facility in less then 6 weeks, and her children plan to sell her house in 6 months.  I’m not sure if they are selling it because the may need funds, because she is not expected to ever come home, or because it would not be a safe place if she ever did come home because as it is a split level and she has to be very careful not to fall, or a combination of the 3.  She also has osteoporosis and they’ve warned if she breaks a hip or something, they can’t do anything for it and most people often die from it.  (no, her children are not kicking dad out, this was decided by all involved)

M is one of the most logical people I know.  She was a computer programmer for years.  That’s pretty amazing since she is in her late 70’s and computers have come a long way in the last few decades.  She took out a long-term care policy years ago, knowing that Alzheimer’s runs in her family; she wanted to make sure things were taken care of if she also got it later, I wish Stuart had been able to get a policy like that, the insurance will cover all of the cost of the facility, and it’s expensive.  I never dreamed that a good assisted living facility would cost $6000 a month.  From what I understand, this place is just wonderful.  They even have dog and horse therapy.

Stuart’s father (Dad) and M got married about 7 years ago, about 7 years after Stuart’s mother passed away.  (I’m really not sure about the exact time in there)  He moved in with her and they have been living in her house.  This is a major life change not only for M, but also for “dad”.  “Dad” does own 3 houses of his own, but someone is living in 1 with the option to buy, 1 is too far out of town for him to travel to the facility M will be in, and the last one needs some repair.  He plans to sell the last one within the next year.  So “dad” has to find a new place to live.

We’ve been discussing quite a bit recently, before the accident, about where we’d like to make our forever home, where we’d like to eventually retire.  (well, when Stuart retires, I haven’t been able to work in years)  After hearing this news about M, we’ve decided to actively pursue moving to Tucson, AZ.  We have family and friends there, it’s warm there year round, and housing is less expensive.  We’ve discussed this briefly with dad and it sounds as if he would really like us closer.  We plan look for a house that has some kind of room for a guest to live-in; a guest house or little apartment would be ideal; that way dad can live with use without feeling like he is intruding on our marriage.  I’ve looked up doctors and I’m please with the possibilites.  I even found a group that supports adults with hearing loss.  Now, Stuart just has to find a job.

This is a major life change for everyone in our family.

It’s a lot to process.

 

In a moment, everything can change….drastically.

 

 

 

http://healthyeating.sfgate.com/results-critically-low-sodium-6200.html

I Give Myself Permission to …

On By WendyIn Chronic Illness, Chronic Pain, Invisable Illness11 Comments

I’ve been participating in a Chronic Pain and Illness photo project.  I participated in the same group last year, you can see those photos on these posts: Chronic Pain/Illness Photo Project, Chronic Pain/Illness Photo Project 2015 Week 2 , and Chronic Pain/Illness Photo Project 2015 Week 3.  This year I’m sharing a few photos here and there, not the whole project.

I’d love to hear your take on this topic.  What do you give yourself permission to???

Today – I give myself permission to Cry.

My x-rays showed more degeneration in my neck. C5-C6
The pain is intense. It just hit me that this is only going to get worse. The pain will always be there.

My father is in the hospital. I can’t go. I can’t ever go.

Today I give myself permission to cry.

(photo taken today, I manipulated it with photoshop, but the tear is real.)

crying

On my mind…

On By WendyIn Chronic Illness, Disability15 Comments

me pop and terry2
Left – Terry, my sister, Middle – My Pop, Right – Wendy, me

I don’t talk about my family often, other than hubby and the furry babies.  But there is something on my mind, something that may explain part of sadness.

My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it.  It was a much easier way to treat cancer than anything I’ve ever seen.  He has been doing well since then….

Until his check up in December, well even then they didn’t think anything was seriously wrong.  When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched.  It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it.  They did this the near the end of January.  During that procedure the doctor found more 2 tumors.

This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it.  Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him.  Now this coming Monday he will have RFA again on both of the tumors.

My father is 82 years old.  This is really hard on him.  It’s also really hard on my sister.  She is taking care of him.  She was taking care of him after his first surgery when I was put in the hospital for having seizures.  She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again.  For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this.  She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.

I haven’t been able to go see my father.

I can’t help either of them.

I can’t help but think….what if…

and I can’t help but feel worried, sad, and guilty.

 

When you have times when you can’t help others who you love, how do you handle it?

I shouldn’t feel guilty for being sick, but at times like this, I do.  Well, I feel guilty that my sister has to shoulder all of this on by herself.  I feel guilty that I can’t even be there to hold my father’s hand.  And I feel guilty that I felt better today than I have since I can remember.

After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.

I had a really good day…..it’s hard when I think about what my family is going through.