August 31, 2023
Well I did not get to volunteer as much as I wanted to this summer. I ended up back in the hospital, but only for 5 days this time back in early July. That day started with me going to the hospital for a test, then to the grocery store. By the time we finished shopping and were back home I was unable to climb the steps into the house. So we had to call the squad and I was hauled off to the hospital for another stay and another round of what the heck is going on with my body? It was multiple weeks until I really felt completely well. I really do not like the fact that when I get an infection my body's MS reaction is to shut my legs down to the point where I cannot walk. Luckily, curing the infection returned my ability to walk, with my crutches.
May 4, 2023
I volunteered with Adaptive Sports Connection at the Franklin County Resource Fair Table on April 27th. I've also taken a First Aid and CPR class to be better able to be a volunteer with Adaptive Sports Connection. I'm looking forward to this summer.
September 2, 2022
Now for some positive news! I've installed the water dishes I bought at the Buckeye Bash into the cat cages. There will be no more flipped water dishes as my 20 pound cat flops off his shelf onto the water dish and gives me that "I did that on purpose" look. I've attached the dish to the door, as far from the litterbox as is possible and still be in the cage. This is in an attempt to keep his joyful digging from throwing litter into the water dish. I will also be able to fill the dish much easier as I will not have to try to find where he has pushed it. Since it is attached to the wall of the cage, actually the door, it will stay put.
I have also gotten the chain back on my bike! I can ride my bike again. I have put up signs saying "NEVER reverse peddle -OR- PUSH FULL Down on Right gear" on the back of the seat, and "NO Full Down" next to the right gear. The one on the back is specifically because my husband was turning the wheel backward when my brother was visiting. I know this is one of the things that makes the bike jump its gear
September 2, 2022
This past week has been really bad. Spasticity has woken me up with the pain multiple nights.
Thankfully, Brian knows how to help me get the yoga strap around my limb so I can do dynamic stretches, pushing and pulling on the muscles to get them to settle back down. The bought with both arms and legs gong spastic at the same time was seriously not fun, as was the spasticity twice in one night.
I am oh so much looking forward to this cold front arriving, the corresponding drop in humidity it will bring, and the consequential improvement in my life less humidity means.
July 25, 2022
Just when I was thinking that maybe I could consider going swimming again my ileostomy pouch blows after only three hours. Thankfully I was at home. I am so utterly glad that I made the decision to not risk any pools at all with this monster.
July 21, 2022
It has been a long time since I last updated anything on here. My body tried to die twice in the past year.
• In Aug of 2021 was very not fun as my husband told me I had to go to the hospital when I could not walk at all. After being carried out by the EMTs, hours in the ER, days in the hospital, the verdict was my white blood cell count had gone below 1! This was due to a resurgence of the Ebstene Bar (sp?) virus which is now believed to be a contributing cause of MS.
• In February 2022 I discovered the pain level above "I will not scream" is "Screaming Banshee!" and never want to go there again. Yes I ended up getting carried out of the house by the EMTs, spending hours in the ER, getting admitted, but this time I got the bonus of surgery. I went from the hospital to a nursing home and back to the hospital. I did not get to go home until March 26th. Sleeping on our tiny couch downstairs for weeks until I could safely climb the stairs was actually wonderful. However, my digestive system is now rewired and I get to poop out of my tummy into an ostomy pouch. Well, actually I have an ilestomy, and just to make it more difficult it healed deeply inverted. The good thing is I AM STILL ALIVE.
Today, July 20, 2022: I finally feel well enough that I did some Gardening! I planted five of the six plants that I bought last weekend! I'm a person again. I have actually walked around the block this month. Saturday I went sailing with Adaptive Sports Connection. I have been to the Columbus Zoo and Aquarium and been able to walk one section of it before being utterly wiped out. When I do things I end up taking the next day pretty much completely off. Yesterday, I think I read a book all day, as Monday I actually did my MS Yoga class for the first time since before February. I do believe I'm actually starting to have my normal level of energy.
November 18, 2021
Today was my PT re-assessment. I'm getting stronger with both legs, however my left leg is noticeably stronger than my right. I doubled my sit to stand measured count. My left leg balance lasted I think 20 seconds while the right was up to maybe 4 seconds before I touched the table to keep my balance. This means I now have 4 more sessions of Pool PT scheduled for this year - with another re-assessment on the last PT session day.
As long as I keep making some progress, even if it is slow progress, I am going to keep going to PT.
October 8, 2021
I walked to my weekly D&D game tonight for the first time since the Covid Pandemic started. I'm healed enough from my hip replacement to be able to walk the distance, and my Legs make the walk safe. It was really nice to be able to walk over to Chris's house and play in person instead of on-line. Everyone in our gaming group is fully vaccinated. I just wish Kris lived in town so all of us could actually be in the same room.
September 3, 2021
Today I went swimming, well mostly floating, with my best friend Becca. It was lovely. However, afterwards when I came home I ended up taking a several hour nap. Yep, I'm definitely still a nap monster. This is one of the reasons I am not going to MarCon this weekend. Much as I would love to get to see all of my convention friends in person again I am just not physically up to it.
September 1, 2021
Last weekend was the first time I was able to get up before 9AM since I landed in the hospital at the beginning on August. I did it both Saturday and Sunday!
Saturday I went to the Buckeye Bash with my friends Kathy and Dan. I took my rollator as I knew I was going to need a place to sit down often. It was a lot of fun.
I bought a pet front carrier that goes across my shoulders. I can put either of my cats partially into on the front of my body and they will stay on my lap and not fall off while I'll petting them. Since my cats weigh 11.5 and 20 pounds this keep one cat on my lap sack helps with a squirmy kitty. I tested this when I got home.
Adding one of my cooling ice packs into the bottom of the sack made it into not just the cat will not fall off my lap sack, but a cool kitty bag. Halbarad loved it! Tyrion was more of I can put up with this but you should really feed me now.
August 21, 2021
I saw Dr. Nicholas on Thursday instead of Tuesday. I get to keep my MS medication! I'll have to have blood work every month after my next infusion in December. I am also scheduled for my third Pfixer shot on Oct 13, and I'm to get my flue shot that week as well.
Getting to keep my MS medication - I'm going to consider that a pretty good birthday present. I also got a really nifty card from my Mom that actaly arrived on my my birthday today. :)
August 15, 2021
Tomorrow I will be going to the doctor for more blood tests to see where I am medically speaking. Hopefully the infection is completely gone. Maybe they will know what caused it. Either way, I am feeling much better and am looking forward to getting back to my Pool PT for my hip on Friday.
Tuesday I'll be seeing the MS Neurologist. One of the medications that they suspected might have caused the problem was my MS medication. It literally is the only medication for my Primary Progressive MS. There are multiple disease-modifying therapies for Relasping-Remitting MS. I absolutely do not want to give up that. It has made such a difference in my life. In addition to helping with my MS it helped me finally stop having grand mal seizures, now named tonic clonic seizues, or what I call grand shake and quakes.
One of the other medication that was suspected was one of my epilepsy medications. Since there are lots and lots of anti-seizure medications I am much more comfortable with giving up this than the only Primary Progressive MS medication that exists.
August 13, 2021
Tuesday I came home from Riverside Hospital. I'm still mostly sleeping as I recover.
August 9, 2021
I'm back in the hospital again. This time at Riverside due to an infection of unknown origin. What we do know is I do not have COVID.
Thursday I had a great Pool PT session at 8 AM followed by Neuro Yoga at Dempsey Center at 10. That went well with my limitation that once I moved to the floor the rest of the class was done on the floor. After class I slowly got up and walked across the hall to where Dan waits when I take Dempsey classes. He was not ready to go so I sat down.
When he was all packed up I was tired and he said he would bring the car down to the red entrance. I nodded and rested. When I tried to get up I couldn't. I ended up needing to have a chair take me to the car to go home. I thought I just needed some food and some rest. I had increased all my PT exercises to 20 and done a yoga class.
When I got home Dan walked me in and briefed Brian before he left. I climbed onto the couch and fell into reading a book before Brian even could ask me what I wanted for lunch. A bit later he poked grilled cheese with caramelized onions at me and water. After eating that I felt better enough to at least listen to my Neuro Chior class, as I has already missed Music Therapy.
When I logged in I was very glad I did. It was fun, even though I didn’t have the energy to do more than part of the last song. I did figure out why we have a problem with one verse, it was a difference in layout that even messed up the director. Brian can fix this and send it to our director. We should be recording that song soon.
After class I went upstairs for a nap. I think he made me an egg for dinner. I have no idea when Brian started poking the thermometer at me. I had a 102 temperature at one point. I was barely able to get to the bathroom with his help. I laid on the floor in our room for a while, until I had recovered enough to get into bed where I could put my CPAP back on.
Friday morning we had to admit I needed to go to the hospital as I was not getting better.
July 5, 2021
I slept upstairs in my bed last night. I ended up sleeping for eleven hours. I feel wonderful. It is amazing how much better I feel after sleeping in a real bed instead of on the couch.
July 1, 2021
I saw my MS Neuorolgist yesterday. I just realized how much I've been sleeping. I do PT, and take a nap. Brian jokes all the time about the "Tyrion effect" referring to my cat. I eat, and the I need a nap. Healing takes a lot of energy. Add MS and this hot weather with PT and it feels like all I do is PT, eat, read books and sleep.
I am so looking forward to when I get to sleep in my bed again. Sleeping downstairs on the loveseat size couch has gotten extremely old. However, I'm following the rules and staying on the ground floor, except for my one trip up the stairs a day. Showering is heavenly!
June 16, 2021
I am really looking forward to tomorrow. I am going to get to go upstairs and take a shower! No more sponge baths at the kitchen sink.
Today my at home PT had me climb our steep stairs. She checked my safety on getting in and out of our antique tub, adjusted the shower chair to the height she wanted me to use, and how I go back down the stairs. I do my descent facing uphill as if I loose my balance I tend to fall the direction I'm facing and this way steps are really close and I'll catch myself on a step with my hand as opposed to actually falling. Brian will be spotting me every time I do the stairs, and when I take a shower. Once a day I can do the 14 steep steps up and down.
She had me do some new standing balance stuff. These I am only to do with her here. Then I did the leg kicks that were nearly impossible when I first tried them last week. The first day I tried some of those I was barely able to do one. Now I can do a full set of 10 of every exercise she has given me easily now. Doing the PT wears me out, but I can do it.
I can really see that I'm making progress!
June 8, 2021
I have a new hip and I’m home! I did too well with in-hospital PT so I’m not authorized for a re-hab center. Tomorrow someone is coming to the house and I find out what is next.
Oh, I need to change those lyrics to Doctors West as I had the hospital name slightly wrong by making it possessive instead of plural.
June 2, 2021
Getting Hip Replacement! by Tasia Russell [pronounce Tah-sha Russell]
Poem/lyrics © 2021 Tasia [NJ Russell] to Leaving on a Jet Plane by John Denver
All my bags are packed, I'm ready to go
They're sitting there next to the door
I can't wait to wake up to say good-bye
My heart is racing, I leave in early morn
In surgery I possible could die
So think of me, and cheer for me, fill out your donor card,
Remember my wishes if I go
'Cause I'm getting hip replacement
Tomorrow surg’ry is happening
Doctor's West is where I go
Before sunrise at 5:45
I'll be checked in feeling oh so alive
I'll be kissing particular pain adieu
No more ouch and grinding of my hip
No more grimaces when I nearly slip
I’m starting my cyborg transformation
No, no, you'll no longer hurt me
The doc will evict you, and cheer for me,
He’ll take one last X-ray before you go
'Cause I'm getting hip replacement
Tomorrow surg’ry is happening
Doctor's West is where I go
Now the day has come to replace you
I know that I will not miss you
You will be cut out and sent on your way
I dream about days moving free without your nagging pain
You’ve tormented me for your last day
The doc will evict you, and cheer for me,
He’ll take one last X-ray before you go
'Cause I'm getting hip replacement
Tomorrow surg’ry is happening
Doctor's West is where I go
'Cause I'm getting hip replacement
Tomorrow surg’ry is happening
Doctor's West is where I go
May 29, 2021
The doctor's office did NOT call this week to cancel my surgery date next Thursday. I'm starting to believe I am actually going to have my hip replaced.
When I went in for my Pre-Op appointment last Monday I was slightly in shock as they did not do any tests at all. All I had to do was talk with a doctor, walk, and have an exam. I did have the highest blood pressure of my life as the exam was extremely painful.
May 23, 2021
Yesterday the Orthopedic Surgeon's office called and I have a new surgery date! June 3rd is the day. Monday morning I will be doing my Pre-Op appointment with my PCP, including another set of blood and urine tests.
My husband keeps saying he is not believing that I'm actually having surgery until I'm actually being wheeled into the operating room. The office did tell me the next open date was the 15th. I really don't want to wait another month. I've put my MS infusion on hold for three full months already risking progression It will be almost four when I can get an infusion after my surgery on the 3rd of June.
May 20, 2021
Bright and early Monday morning, I saw a kidney specialist and learned a new word, Nephrologist. Nephrology is the branch of medicine that deals with the physiology and diseases of the kidneys. I've added yet another doctor to my team. The Nephrologist basically said he did not know why my kidney numbers were where they are, this might be my new normal, or they might heal on their own. I had my blood drawn to tested my kidney function again. I'll see him again in three months. In the afternoon I was back at my PCP where they faxed the Nephrologist's report to the Orthopedic Surgeon's office.
Yesterday, the Orthopedic Surgeon's office called and let me know the doctor was in surgery Tuesday, Wednesday, and Thursday this week and would review the information Friday. I am so, so, so, hoping to hear from his office, or possibly the doctor directly on Friday, or Monday at the latest.
What I want to hear is that they will put me back on the operating schedule in the next few weeks. My surgery was originally scheduled for April 29th. I would really like to have my new hip installed before the end of May.
May 12, 2021
Well, my surgery date has been cancelled again. I will be called on Friday to get scheduled to see the Kidney doctor. My PCP told me that the Kidney doctor was OK with going forward with the surgery but the surgeon had the final call. He cancelled my May 13th surgery. I do not have another surgery date scheduled... yet.
I called a friend who lives in town and had hip replacement done by another surgeon. Unfortunately, that surgeon does not accept my insurance. I tried to change my insurance to straight Medicaid, but I would have to be in a nursing home, or a something like that, to qualify and that is the only Medicaid that the doctor my friend referred me to accepts.
So I am going to go into my insurance company and look for another doctor on their website. I need this hip replaced soon. I have put off my MS infusion nearly three months already.
May 5, 2021
The new plan is for me to drink a gallon of water a day to rinse the Aleve out of my system. I'm on my third quart today as I type this. This Friday I'll re-do the lab tests. Provided I pass the labs, I'll have my hip replacement done Thursday, May 13th. This means, just a two week delay until my next attempt to get my hip replaced. Buy hey, I'm getting it replaced... eventually.
Once that is done, and I've healed enough that the orthopedic surgeon says I'm good I can get my next dose of my MS medication. I may skate through without my Primary Progressive Multiple Sclerosis actually progressing. Modern medicine has developed to the point where the world actually has an effective medication for PPMS, and complete hip replacements. :)
April 28, 2021
Just after noon today I was told I to check into the hospital at 9:15 tomorrow morning! I was calling all of my family, posting on FaceBook, and so happy. Then a few hours later, with a test result not where the doctor's wanted it to be, and I'm again waiting another week. My surgery date has been moved back to May 6th due to my lab results. I will get a new hip, just not tomorrow.
Climbing back out of the depression pit I tell myself once again, "It is only pain. I can endure."
April 26, 2021
I'm scheduled to have my extremely painful right hip completely replaced on April 29th. However, I have an infection that must be cleared up. So, I'm taking my antibiotics and drinking plenty of fluids. I will re-take the tests the morning before my scheduled surgery date to determine IF I get to keep that surgery date
