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Invisible Illness

    Feeling Some Hope

    Feeling Some Hope

     

    I wonder when my life became a revolving door of doctor’s appointments, nausea, fatigue, chronic pain, migraines, and the list goes on.  I spend my time managing my life around my illnesses.  I have a no more than one doctor appointment in one day due to the crappy chairs in the waiting rooms that cause more pain, doctors falling behind because it always happens.  I have a few doctors that I get in right around my appointment time.

    I’ve had to have a few doubled up appointments because my Pain Care doctor wants to have me try Low-dose naltrexone or LDN.  I’m a good candidate but it entails having all my doctors aware and on board so that we can work quickly if any complications arise.  What is LDN?  Well, the short answer is it’s a smaller dose from .05 to 4.5 mg compared to the 50 mg dosages that are given to persons going through opioid withdrawal.  The LDN is what’s called off-label because they’re still doing studies on it.  Yes, I feel like I’m part of a study, I’m not but the process has been hard fought.

    What is low-dose naltrexone and why is it important?

    Low-dose naltrexone holds great promise for the millions of people worldwide with autoimmune diseases or central nervous system disorders or who face a deadly cancer.

    Source:  http://www.lowdosenaltrexone.org

    My conditions of Lupus, Depression, Hashimoto’s, Fibromyalgia, are just a few of the conditions that LDN can help.  I’ve also read that it can help with migraines.  I’ve lost three years of my life so far to the storm that my body has gone through.  I’m currently seeing a General Practioner monthly, my Pain Care Doctor (anesthesiologist) weekly for therapeutic nerve injections, Psychologist and Psychiatrist both vary between every 4-6 weeks (it was at every two weeks), my Rheumatologist, I see quarterly now but I can call if I need to see her sooner and then last but not least is my Endocrinologist who I see twice a year but I went in to see him three months early so that we could get this LDN started.  I also supplement my doctors with massage, chiropractic and essential oils.

    My Endocrinologist has applied for a FreeStyle Libre Glucose Monitoring system.  The fears are that I’ll end up in more hypoglycemic episodes in addition to the high sugars.  I think it’s a product that I’ll love.  So please cross your fingers that I get approved for this device.

    In between all these doctors appointments, I try to keep up with something in the house be it dishes, folding laundry, sweeping up dog hair on top of my chronic pain, nausea and almost always present migraine.  My daughter has gotten me to the actual cinema a couple times and the new lazyboy recliners are any spoonies friend for a three-hour movie.

    I’ve been more “lupusy” of late, I basically fell asleep on Thanksgiving at the table and then slept for two more days.  For me, the lupusy feeling is more achy joints, constant headache, more nausea (is that possible?), itchy and low-grade fevers, basically the feeling like having the flu but it doesn’t ever go away.

    This week on deck, my shots aren’t until Thursday and I have a 2nd Dr appointment that day.  I have only one other this week so I’m feeling like it’s a slow week.  I have a pile of lab work to get done but the majority of the vampires are on strike and the couple times I’ve gone to the other labs, they closed really early because well everyone needs bloodwork.

    I had a good day with my daughter

    I feel like this blog post was so technical but for me, it’s exciting that all my doctors are on the same page, I may be on the LDN soon.  Now back to the regularly scheduled chaos of getting our house back to pre-flood, my daughter and her friend painted the first coat in the family room and it looks good.

    Journey with me … mini2z

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    After The Storm

    After The Storm

    Somewhere, in my memory box is a poem called After The Storm that I wrote. I haven’t found that box and hope it survived our flood.  It also makes me think of the poem, After a While by Veronica A. Shoffstall and the blog I wrote featuring it titled: Hopeful.  

    What does this have to do with After the Storm?  Well, I will find the poem but the storm for me has been my health but more recently we experienced a catastrophic rainstorm.  We had almost seven inches of rain in less than three hours.  As a result of this storm, we flooded, in our yard and then in the house.  We also got rain from the roof that leaked as a result of the catastrophic windstorm in March.  (that’s another rant)

    Photo from the Windsor Star – link on photo

    What the Ditch/Drain is like normally

    We have this check valve or back up valve that is installed so we don’t get water.  Well, the valve failed.  At first, the water was just in the yard, on the street but then it came rushing up the drain in the floor.  When we moved into this house, it was covered with tinfoil.  The only water we’d had in 22 years was when the hose broke on our washer when we were out at a birthday party.  We have a wet/dry vacuum but it would fill in seconds but our son brought home a sump pump, then our son went to my grams to get her spare sump pump.  We had two pumps going in the basement and we were able to keep it to about 3-4 inches when our neighbours had a foot to a foot and a half of water.  On top of all this, we were getting leaks in the bathroom and kitchen.  The kitchen isn’t so bad but the bathroom is another story.  Our insurance company, Allstate, has been great.  Our basement is covered to our maximum allowed and because we did so much of the hauling of the wet and severely smelly carpet, boxes and clothes out to a bin we ordered, we will not have to pay the deductible.  The roof that was supposed to be replaced after March is now going back to the insurance company to reassess the damage because it now includes water damage that shouldn’t have been there.  We are waiting on that.  After the storm, we already have the cheque from Allstate and can start to put this part of our life back together.

    L-R, Backyard Lake, Flooded Road, Flooded basement, first pile of wet, soggy basement items, The Sasso Bin with load #2, the Red Sky at Night After the Storm

     

    I’m also working on my health.  My health storm isn’t over but I’m choosing to find the balance.  I’ve become a doTerra Wellness Advocate to save money on essential oils for my personal use but it’s become so much more to me.  I can look in every room of the house that and see doterra products, be it oils to shampoo, to soap to a diffuser or two.  Slowly, I’m adding more and more natural, healthy for me items into my life.  I’m excited about doterra and the direction it’s heading for me.  I have my now too small box of oils, a larger one is on my Amazon wishlist!  I have doterra products all over the house now, hand cream that is not greasy, soap and shampoo in the shower.  I plan on making my own bath bombs because the store bought ones are just too strong for me.  I have lemon and wild orange on my window sill for adding to water.

    I’m still getting nerve block shots in my head, neck, back and SI joints weekly.  The hope is to be able to go every two weeks soon.  I have scheduled the appointment to see my Endocrinologist so that we can all work to trying the LDN. I have every doctor on my team visits in the next two weeks, after trying to only schedule two per week.  It is actually exhausting getting ready, getting there on time only to wait for long periods of time.  I have been really out of sorts and finally figured out that I was doubling my iron pills and not taking my antidepressant.  Yeah, that was a really stupid thing.  Lesson learned, look at the actual label before filling up your Pill Drill for the week.  Our new mattress set will be delivered on Friday, so we are hoping for a great night’s sleep.

    Sleep, I need sleep, it’s just been so exhausting.

    mini2z … journey with me

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    Depression and My Major Mood Swings

    Depression and My Major Mood Swings


    My depression has been worse than it’s been lately.  The least little thing sets me off, being alone most days all day gets me thinking too much and then when someone comes home I don’t want to talk to them.  More so if the question is. “what did you do today or what’s for dinner?”  Seriously, how are you?  How’s your pain and nausea levels?  Do you even want to eat?  A point of reference, I don’t eat much anymore and it has to be very bland and only a few things that I can eat.  As my depression ebbs and flows, I don’t feel that I can write.  I feel even more lost in my thoughts.  It doesn’t help that simple tasks have me finding that I’m having more and more memory issues.

    For the past few weeks, I’ve had a day here and there that the depression was worse or something made it worse and what was a good mood turned into me being a bitch.  I’ve lashed out at my best friend, who I miss with a vengeance and fear we will never be close again.  I’ve lashed out at my kids together and separately and said some mean things. Last night I lashed out at hubby and the kids.

    Last night I lashed out at hubby and the kids. Click To Tweet

    I’m home alone with the pupalups most days.  My family has school or work and leave the house at all different hours of the day.  I get not wanting to talk to me first thing before they go to school or work as I’m not a morning person either.  I’ve made an effort to be in the living room and that’s part in parcel with my back issues and sleeping on the couch.  I’m in the family nerve centre and only my husband talks to me and sometimes it’s that dinner question.  Some days, getting a shower is iffy because if I’m too dizzy I don’t want to try when home alone.  I’ve had too many falls lately.

    I just want my kids to spend a few minutes talking to me.  Tell me about your day, gripe about your day.

    I just want my kids to spend a few minutes talking to me.  Tell me about your day, gripe about your day.  I also want help.  I had to let the housekeeper go do to financial reasons and I can only do so much.  The company that is paying my long-term disability didn’t take enough or very little income tax off and it was a whopper of a bill that was due immediately. That bill had sent me into a deeper depression than I have been.  My one doctor keeps changing my appointments and he’s the doctor I really need to see.

    Pain and depression are closely related. Depression can cause pain — and pain can cause depression. Sometimes pain and depression create a vicious cycle in which pain worsens symptoms of depression, and then the resulting depression worsens feelings of pain.  Source:  MayoClinic.org

    I’m apologising to my friend, my kidlets, my husband and even my mother.  I’m sorry my depression has had me in a billion different moods.  I have no excuse for the way I’ve treated any of you.

    I am asking that if I ask you to do something in the house, please do it.  If I have to ask five or more times, then I’m going to lose it and yell.  No one likes me yelling but I shouldn’t have to ask six or more times to take out the garbage, cut the grass, bring a load of laundry up, clean your room, put your dishes in the dishwasher.  We all need to pitch in because I can’t do it all anymore.

    I’m in pain and you all know that but pain makes depression worse, worsening depression makes pain worse.  It’s an endless cycle.

    I'm deeply sorry to my family that I've hurt and my best friend who is going through her own battles and I compounded them. Click To Tweet

    I’m deeply sorry to my family that I’ve hurt and my best friend who is going through her own battles and I compounded them.

    I can only try to do better.

    Journey with me … mini2z

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