I was finally approved for Orthovisic and my first injection of 3 was on March 2.
I was so excited when I started this post. Little did I know. Here’s how it’s been so far:
Wednesday, March 2, 2022 I got my first Orthovisc injection.
By Thursday, March 3 my knee was 90% better
On Wednesday March 9, I had injection 2
On the 10th, knee is still better
March 11 slept 91%, no knee pillow. good night’s sleep finally
March 12 woke up with sharp knee pain – screamed
March 13 – maybe that it was 21 degrees out affected things, maybe not. Knee hurt a little all day.
Somehow, the pain feels different than before the injections. It feels like it could be the back of my leg – maybe I tore my muscle after I felt so good after Shot#!.
March 15, Stepped out of bed sharp pain
March 16, Injection 3, final. It felt like needle moved in my knee
And from there things go
I started having pain standing/walking again and using a pillow between my knees at night. Many nights I took 3 Tylenol just to see if I could get some sleep
March 26, I stood up from bed, fell backwards back down. Luckily, the bed was there.
March 29, The pain was excruciating so I 3 tylenol before bed and ordered a gel band from amazon. It freezes so I can ice my knee all around. I also did some reading about pain after OrthoVisc and some sites mentioned fluid on the knee or fluid behind the knee (Baker’s Cyst). I tried to look at my knees in the mirror without much success but my DH looked and he thought my left knee, the one in question, looked bigger than the right.
March 30 – today! – I got up this morning and I could barely walk. I went on amazon again and ordered a 3-wheel walker. I tried to make an appointment with the doctor who did the OrthoVisc but he wasn’t available until April 28.
Luckily, I was able to make an appointment for today with my GP-type doctor. He watched how I walked and determined that my knee is swollen all around.
He said “Visibly swollen with protuberance in posterior fossa. Not warm totouch. Ballotable patella.
See aspiration note below: lateral subpatellar approach enabled withdrawal of 5cc straw colored clear fluid. 40mg kenelog + 4cc lidocaine injected easily. Substantial pain relief afterward and gait improved“
He drained my knee (Arthrocentesis) some but couldn’t get a lot of the fluid out. Actually, looking at the numbers, he took out about equal numbers with the lidocaine and cortisone he injected I suggested he install a faucet to help me keep this draining. He was hoping that it might continue to drain into the thick bandage he put on.
In his after-care notes he said “I hope that this injection and ice allow the swelling in you knee to go down. If the pain resumes along with swelling, I suggest taking the oral prednisone. Regardless, please get in touch with Dr. X (Orthovisc injector). Let me know if you have increased pain, redness, warmth, or fever. “
Oh joy!
I came home and was able to take a nap, at least. Unfortunately, I had to cancel piano students to do so. My knee is still uncomfortable and I’m having trouble walking but I think the injection and the Arthrocentesis help in the coming days.
I really don’t want to do this knee draining thing often. Even with the lidocaine, it was painful. Not the worst pain I have ever had but nothing I’d sign up for fun. My worst-ever pain day was April 28, 2006. That day was the day I learned I had Kidney Cancer, which became the reason I can only take Tylenol for my pain. My endo will be unhappy if I take that Prednisone and he is always unhappy when I get cortisone in my knee.
Sigh. Today is the 9th anniversary of the fall on my knee. There is not much change at all. I keep a record everyday of how I’m doing in a variety of areas. Every day I check off “knee pain” but I also have levels 1-10. I don’t think it ever goes below 5.
Some nights I wake up with throbbing and move to the sofa. I think maybe tossing and turning in bed makes my knee worse – I can’t do that on the sofa.
SalonPas is still my friend. And braces and Tylenol.
This year, I hope to get that gel injection. I’m a bit hesitant because it may make things even worse for a while and it takes 3 weeks to complete the series. My schedule is already pretty tight and I don’t know how to work in 3 more appointments.
Our trip to Alaska (mentioned below) worked out well. I travelled with the aforementioned SalonPas etc. and carried all in my backpack on various excursions.
Due to COVID we had to be tested before we went and show our vaccination cards several times before boarding.
I have the CovidWise app on my phone. when we got home, I found that we had been exposed before the cruise while we were in Seattle. I didn’t find this out until after the cruise because I had my phone turned off at sea. It’s just as well that I didn’t know before/during. I’m not sure what I would have done.
This year we have been to New York a few times to see our grandson. We’ve started walking from the hotel to their home. It hurts but it’s useful. It’s also faster to walk than take an Uber, thanks to one-way streets in NYC.
Our Tattoo that was cancelled last year has been rescheduled for August. I was surprised that we got a credit for this year. I’d figured that it was a donation to the Tattoo fund. So, we will get to walk around Scotland in August.
In September we have another cruise coming up – I will have to schedule that gel injection (hyaluronan (ORTHOVISC) 30 MG/2ML injection 30 mg), probably in July to make it work for August and September.
This is a continuation of an ongoing knee issue. It started in 2013 with Icy Days and Mondays and Bee’s Knees I’m hoping to end my knee pain in the very near future.
Here is is July and we have a second trip to see our grandson this coming weekend and the rescheduled/rescheduled cruise in August. That cruise started out as going to Norway a couple years ago. That was canceled so we decided on Alaska with the train to Denali in June. That was cancelled and Canada isn’t allowing people in, so we’re sailing out of Seattle, past Canada and on to Alaska. We’ve seen some of the ports already but I just wanted to go somewhere, anywhere.
I’ve been having pain, bigger again and I hate to have that in NYC – or on a cruise. It’s one thing to be kept awake with pain here at home and another entirely when you want to do things.
I had trusted that the doctor cleared that gel injection (hyaluronan (ORTHOVISC) 30 MG/2ML injection 30 mg) with my insurance company but it was a new doctor (the 5th one for my knee issues) today. The last doctor had put the paperwork in but it never went anywhere.
Today was too soon for another cortisone shot. I could have paid $380 for the gel and hoped that insurance would pay – but that was the first of 3 weekly injections and the doctor didn’t think it would start to help by this weekend, anyway.
He mentioned physical therapy again and/or possible surgery. He did send me for another x-ray, which was promising. By some fluke, his office takes my insurance but the attached radiology department doesn’t – so we went to the next-door hospital for that.
My results:
There is moderate to marked degenerative arthritis in the left
knee with joint space narrowing and osteophyte formation which is most
prominent in the medial compartment. A minimal joint effusion is
present. There is no evidence of a fracture.
After I left the doctor, a nurse called and said that I might be allergic to the Voltaren that a previous doctor had prescribed but I haven’t tried yet. I’m supposed to try that and let them know.
I guess I’ll be taking my SalonPas, knee brace and lots of Tylenol to NYC.
“Quick kneecap recap” below from April 7, 2021:
First of all, came this article. I’d already decided to get only one – max 2 – injections a year, with one of them being a week before a cruise. Our cruise scheduled for June most likely will not happen – neither will our trip to see the Edinburgh Tattoo again in August.
I had been keeping up with water aerobics and the hot tub until both of those were canceled due to COVID-19. So, my knee pain gradually started getting worse again. Luckily, I’m not walking around so much and we don’t have stairs at home. About 8 months or so ago, the pool opened up for water walking and lap swimming – with lots of rules, of course, but I manage to go about 3 times a week. Often DH goes with me. Unfortunately, the hot tub isn’t open
I’m still having lots of meetings on Zoom as well as piano teaching. For those meetings, I’ve been using an iPad on a music stand. To be able to see well while sitting on the sofa, the stand and iPad need to be almost vertical.
My last steroid injection was in September 2019. Thanks to COVID, I haven’t been hardly anywhere so no real (k)need.
However!, New York City has lifted it’s quarantine restrictions, so we’re going to go meet our new grandson…and I need an injection before we go.
Monday, April 5, I got that injection – and a lot of hope, finally. For my fourth injection, I had a fourth different doctor. This one had other options for me that no one else had every suggested. A long-lasting gel injection, a saline/dextrose solution (I said it sounded like salty sugar water!)
On Monday, he actually used Ultrasound to guide the needle in. He went about 2 inches above the knee from the outside to get the the inner part. The others didn’t do that – they just went directly into the knee, just guessing where to send the steroids.
It was so cool watching him do this. I told him my last injections had lasted maybe a couple weeks and he said they should be much longer than that, which is why he wants to try the gel injection (hyaluronan (ORTHOVISC) 30 MG/2ML injection 30 mg) in the summer. Apparently, it takes several months to get insurance approval – and he already started the paperwork!
I had the usual extra pain on Monday night (took 3 Tylenol), and normal pain on Tuesday, Wednesday, I was feeling pretty good but had to skip the pool because you can’t go in for 48 hours after a knee injection.
I am just so happy to see other alternatives to steroids – or surgery.
Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary. I had some issues after my first COVID-19 injection (Moderna) but not too bad. My booster was October 27, 2021. That time I was smart and updosed on my Cortef (hydrocortisone) right after the shot. My main side effects this time were chills and fatigue.
Wednesday, October 27, 2021: This time I went to a CVS inside a Target store.
I got a text from CVS asking me to click a link when I arrived at 11:00 and it gave me directions on where to go.
I was about 10 minutes early, so I had to wait a bit, even though no one was ahead of me.
The nurse asked if left arm was ok to use.
The shot was not quite as fast – I felt it a bit but I am used to giving myself daily injections so this was no biggie..
I sat in the waiting area for about 10 minutes to be sure there were no problems but no one checked on me.
This time I was smart – right after leaving the CVS I took a stress dose of Cortef (hydrocortisone).
I also had an appointment with my doctor about a recurring cyst. She prescribed doxycycline (antibiotic) twice a day on an empty stomach.
I cancelled my piano students for the day and took a nap for the rest of the day wearing a sweater and hoodie and under three blankets – I was so cold and a little dizzy/disoriented – I can never remember the difference between the two..
About 2 am, I got up needing to go to the bathroom and I was still so cold. I was under 3 blankets and a bathrobe.
Thursday, October 28, 2021: My arm was sorer than Monday and I was still feeling very cold and dizzy.
It was a work day so I went in but I know I nodded off at my desk a few times. I went home about 3 and fell asleep almost immediately. My DH woke up at 6 for a meeting – I had intended to sleep through it. It was at church, so I laid down on one of the pews and slept there through the meeting. DH took me home instead of going to choir rehearsal.
I skipped my growth hormone injection again.
I had no trouble sleeping this time and slept until about 10 on Friday.
Friday, October 29, 2021:I don’t know if it’s from the injection of the antibiotic but I threw up in the morning and I went back to sleep. I was feeling cold but I don’t know if it was chills or really a cold.
It was my mom’s birthday (98!) but we didn’t really get to celebrate much.
I skipped my growth hormone injection again. I didn’t fall asleep right away at bedtime and was able to read a little bit so that’s an improvement!
Saturday, October 30, 2021: I’m a little more tired than usual but ok – I woke up about 8 for my first antibiotic and didn’t take my first nap until 12:30. Then, I spent time napping through the day. I’m still cold but “normal cold” with just a sweatshirt (and socks).
My arm is achy but not really sore like yesterday.
Sunday, October 31, 2021: Just the normal tiredness. Hooray! We went back to water exercise. I took off my bandage for the first time and noticed that the site had bled a little. Oh well. While I was in the pool, I had another of those lightning headaches but didn’t get out of the pool for Tylenol because I knew it was quick.
Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.
In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.
A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.
Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.
Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.
The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.
A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.
Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.
This is a continuation of an ongoing knee issue. It started in 2013 with Icy Days and Mondays and Bee’s Knees I’m hoping to end my knee pain in the very near future.
Here is is July and we have a second trip to see our grandson this coming weekend and the rescheduled/rescheduled cruise in August. That cruise started out as going to Norway a couple years ago. That was canceled so we decided on Alaska with the train to Denali in June. That was cancelled and Canada isn’t allowing people in, so we’re sailing out of Seattle, past Canada and on to Alaska. We’ve seen some of the ports already but I just wanted to go somewhere, anywhere.
I’ve been having pain, bigger again and I hate to have that in NYC – or on a cruise. It’s one thing to be kept awake with pain here at home and another entirely when you want to do things.
I had trusted that the doctor cleared that gel injection (hyaluronan (ORTHOVISC) 30 MG/2ML injection 30 mg) with my insurance company but it was a new doctor (the 5th one for my knee issues) today. The last doctor had put the paperwork in but it never went anywhere.
Today was too soon for another cortisone shot. I could have paid $380 for the gel and hoped that insurance would pay – but that was the first of 3 weekly injections and the doctor didn’t think it would start to help by this weekend, anyway.
He mentioned physical therapy again and/or possible surgery. He did send me for another x-ray, which was promising. By some fluke, his office takes my insurance but the attached radiology department doesn’t – so we went to the next-door hospital for that.
My results:
There is moderate to marked degenerative arthritis in the left
knee with joint space narrowing and osteophyte formation which is most
prominent in the medial compartment. A minimal joint effusion is
present. There is no evidence of a fracture.
After I left the doctor, a nurse called and said that I might be allergic to the Voltaren that a previous doctor had prescribed but I haven’t tried yet. I’m supposed to try that and let them know.
I guess I’ll be taking my SalonPas, knee brace and lots of Tylenol to NYC.
“Quick kneecap recap” below from April 7, 2021:
First of all, came this article. I’d already decided to get only one – max 2 – injections a year, with one of them being a week before a cruise. Our cruise scheduled for June most likely will not happen – neither will our trip to see the Edinburgh Tattoo again in August.
I had been keeping up with water aerobics and the hot tub until both of those were canceled due to COVID-19. So, my knee pain gradually started getting worse again. Luckily, I’m not walking around so much and we don’t have stairs at home. About 8 months or so ago, the pool opened up for water walking and lap swimming – with lots of rules, of course, but I manage to go about 3 times a week. Often DH goes with me. Unfortunately, the hot tub isn’t open
I’m still having lots of meetings on Zoom as well as piano teaching. For those meetings, I’ve been using an iPad on a music stand. To be able to see well while sitting on the sofa, the stand and iPad need to be almost vertical.
My last steroid injection was in September 2019. Thanks to COVID, I haven’t been hardly anywhere so no real (k)need.
However!, New York City has lifted it’s quarantine restrictions, so we’re going to go meet our new grandson…and I need an injection before we go.
Monday, April 5, I got that injection – and a lot of hope, finally. For my fourth injection, I had a fourth different doctor. This one had other options for me that no one else had every suggested. A long-lasting gel injection, a saline/dextrose solution (I said it sounded like salty sugar water!)
On Monday, he actually used Ultrasound to guide the needle in. He went about 2 inches above the knee from the outside to get the the inner part. The others didn’t do that – they just went directly into the knee, just guessing where to send the steroids.
It was so cool watching him do this. I told him my last injections had lasted maybe a couple weeks and he said they should be much longer than that, which is why he wants to try the gel injection (hyaluronan (ORTHOVISC) 30 MG/2ML injection 30 mg) in the summer. Apparently, it takes several months to get insurance approval – and he already started the paperwork!
I had the usual extra pain on Monday night (took 3 Tylenol), and normal pain on Tuesday, Wednesday, I was feeling pretty good but had to skip the pool because you can’t go in for 48 hours after a knee injection.
I am just so happy to see other alternatives to steroids – or surgery.
I recently read an article that said “Studies show that high-risk skin cancer patients given 500mg of Vitamin B3 twice a day for a year experienced a 23 percent reduction of new non-melanoma skin cancers, 20 percent reduction in basal cell carcinomas and 30 percent reduction in squamous cell carcinomas.
Vitamin B3 in the nicotinamide form helps replenish cellular energy and repair damaged DNA. It’s contained in foods like meats, fish, eggs, cereals, milk, nuts and legumes, but, for skin cancer patients, the amounts in these foods are too low to provide therapeutic doses. Multivitamins also do not contain enough Vitamin B3 for those at risk of skin cancer.“
Since I just had Mohs surgery for squamous cell carcinoma, I immediately went to amazon to search for nicotinamide. Not surprisingly, they had 475 results. I chose the cheapest one at $.05 and will give it a try. I figure a dime is worth it to maybe avoid another bout of skin cancer.
Hopefully, there will be nothing to report in the new cancer category!
After I posted Just Nosing Around, I joined a Facebook group for Skin Cancer Warriors. I was amazed how supportive they are. I never had any support with Cushing’s or Kidney Cancer pre-op, so it was really nice to be on the receiving end for once.
From that FB group, I learned that May is Skin Cancer Awareness Month and there is a fundraising page (of course) so I actually decided to give it a try. I figure at least it will be another tshirt. LOL This is my page, if anyone is interested: Skin Cancer: Take a Hike!
Sunday, April 25, 2021. I’ve been reading that handout I posted (below) and it’s made me start looking around for shirts that button, rather than pull over the head. I mostly have tshirts and some of those necks are pretty tight. I think I’m ok for at least tomorrow and the next few days.
Also, in preparation, I downloaded some books for my Kindle and started a few coloring images in Happy Color so that I wouldn’t have to use WiFi to download there.
Also, I remembered that I should stress dose tomorrow! I started packing my bag to include Tylenol and I’ll add extra cortisol, a bottle of ice water and my iPad tomorrow.
So, Monday, April 26, 2021 I had my Mohs Surgery.
I remembered to take my extra cortisone! We got there 30 minutes early, which worked in our favor – for once.
Tom could go in with me while I had my surgery and I stayed in room the whole time. The nurse came in and we went over basic questions. The surgeon came in and recognized where the location was – he could see it over the top of my mask. He explained what he’d do and asked if there were any questions, then used a marker to make a circle around the cancer.
He injected the pain killer. I started when it first went in but then it was ok. He asked if I could feel anything. I said no so he continued.
They bandaged everything, cauterized the blood vessels and took the cancer off to the lab.
When they came back, the surgeon said that the cancer was gone. He used dissolvable stitches and a skin graft. I could see quite a bit of blood during this. He did more cautery and the nurse put on lots of bandages which I had to keep on for 24 hours. Because of the skin graft, he called in antibiotics.
Tom drove home – it was hard for me to see over bandages. About 1 pm I took 3 Tylenol. I took first antibiotic about 2 pm – Doxycycline Hyclate 100 mg. I take those twice a day for 10 days because of the skin graft.
Then, I fell asleep and woke up about 8:30PM and had some dinner. 3 more Tylenol and another antibiotic.
I slept ok overnight and woke up about 5:30 am with pressure from the bandages on my face. I tried to sleep for about another hour, then just got up. No real pain just a dull ache. If I touch my nose, it does hurt…so – don’t touch!
Tuesday, April 27, 2021, I kept my video off for my work Zoom meeting so no one would see all those bandages. I skipped an in-person afternoon meeting but about 4:00 pm I got to change the bandages so I could see what I’m dealing with:
Right at the bridge of my nose it’s a little bit swollen and it’s uncomfortable to wear my glasses. I had a handbell rehearsal Tuesday night that I also skipped.
Wednesday is normally one of the three days a week I do water exercise but I can’t get this thing wet so I stayed home and did a little work. I didn’t take the antibiotics with food, just with coffee, and that really upset my stomach. I ended up cancelling my piano students for the afternoon. They had all asked last week about the biopsy bandage – I wasn’t sure how I would explain this one to a first grader. My stomach was still upset from the antibiotic anyway.
I had bought new bandages on amazon that were supposed to be latex-free. I think they skirted around that claim somehow because as soon as I tried them, my nose was itchy. At first, I thought maybe my nose was healing but I ripped off the bandage and went back to the old plastic ones that made my nose red. The itching stopped but after that, I had a lot of trouble sleeping and finally just got up about 3:00 am.
Other healing pictures:
April 30, 2021:
May 2, 2021
Update May 7, 2021. Big Day – I finally went back to water exercise after nearly 2 weeks off and it felt so good to be back, to be normal. Besides that, I ran into my son’s elementary school music teacher (I had also been her piano accompanist) and we chatted about how things were going.
I also went (nervously!) to my main dermatologist for a full body scan and no other skin cancer was found.
May 8, 2021, Healing better than I thought it would.
May 24, I go back to my surgeon where I will (I hope!) get more good news. Assuming it’s good news, this post is done.
It seems like my nose is always at the forefront of my medical issues. Cushing’s disease? Let’s do a whole surgery through her nose.
Allergies? Let’s clog up her nose so she can’t breathe.
Kidney cancer? Let’s stick tubes up her nose so she can breathe.
None of that stuff did her in, so let’s try playing with the outside this time.
I hadn’t thought much about my nose lately unless I was adjusting a mask over it for COVID. Luckily, I was never tested for COVID because that would have been a swab…up my nose.
In January 2021, I was just keeping my nose out of other people’s business when I noticed weird stuff on my nose. I made the obligatory doctor appointment. He thought that part of my issue was allergies to paper masks and gave me cream – guess what!?!? – Kenalog, a steroid cream form of the stuff they inject into my knee. Part of the description for that reads “Do not use it on the face, groin, or underarms unless directed to do so by your doctor.” I was directed by my doctor so I guess it was ok but I sure hate using additional steroids.
In the middle of the nose-redness to be fixed by Kenalog was a really weird thing. The doctor thought it would be useful to use liquid nitrogen on it and I figured that was relatively easy so I went for it.
The morning before the liquid nitrogen
So, he sprayed the nitrogen on and said to use the Kenalog twice a day – the thing should fall off in a couple weeks. A couple weeks spread out to about 5 and it fell into my mask a day or so after I had a dream about it falling into the swimming pool and infecting everyone there. Fortunately, my dream didn’t come true!
Unfortunately, when it fell off, it left a hard red bump which stuck around and started looking weird again.
So, February 22, I called the doctor again and made an appointment for March 10. He said he could do the nitrogen thing again and go a bit deeper. I thought, maybe no. Let’s move on to the professionals. So, I got a referral to a dermatologist on April 16.
Even with my mask on, the dermatologist could see the top peeking out of my mask and proclaimed Squamous Cell Carcinoma! She did do a biopsy, so I had a few days of hope. I thought the biopsy would be a smaller amount, though.
So, I put Aquaphor and a bandage on my nose twice a day…and my nose got red under the bandaid. Allergy to the adhesive? I know I’m allergic to latex, so we have plastic bandaids. Whatever.
April 21 I got the official results. The dermatologist was right the first time. Monday, April 26 I will have Mohs surgery.
Of course, I set out to watch this surgery on YouTube.
Because I always “own” all my diseases, I bought a t-shirt which I will wear proudly. Of course, it has a butterfly and the words: “They whispered to her – you cannot withstand the storm. She whispered back – I am the storm.” and Squamous Cell Carcinoma Awareness.
I have so many t-shirts – not just for places but for causes, diseases, work, piano teaching… I hope this is the last non-fun one I get!
I am not anticipating any changes in this over the weekend so the next post will be sometime next week, after the surgery.
It seems like my nose is always at the forefront of my medical issues. Cushing’s disease? Let’s do a whole surgery through her nose.
Allergies? Let’s clog up her nose so she can’t breathe.
Kidney cancer? Let’s stick tubes up her nose so she can breathe.
None of that stuff did her in, so let’s try playing with the outside this time.
I hadn’t thought much about my nose lately unless I was adjusting a mask over it for COVID. Luckily, I was never tested for COVID because that would have been a swab…up my nose.
In January 2021, I was just keeping my nose out of other people’s business when I noticed weird stuff on my nose. I made the obligatory doctor appointment. He thought that part of my issue was allergies to paper masks and gave me cream – guess what!?!? – Kenalog, a steroid cream form of the stuff they inject into my knee. Part of the description for that reads “Do not use it on the face, groin, or underarms unless directed to do so by your doctor.” I was directed by my doctor so I guess it was ok but I sure hate using additional steroids.
In the middle of the nose-redness to be fixed by Kenalog was a really weird thing. The doctor thought it would be useful to use liquid nitrogen on it and I figured that was relatively easy so I went for it.
The morning before the liquid nitrogen
So, he sprayed the nitrogen on and said to use the Kenalog twice a day – the thing should fall off in a couple weeks. A couple weeks spread out to about 5 and it fell into my mask a day or so after I had a dream about it falling into the swimming pool and infecting everyone there. Fortunately, my dream didn’t come true!
Unfortunately, when it fell off, it left a hard red bump which stuck around and started looking weird again.
So, February 22, I called the doctor again and made an appointment for March 10. He said he could do the nitrogen thing again and go a bit deeper. I thought, maybe no. Let’s move on to the professionals. So, I got a referral to a dermatologist on April 16.
Even with my mask on, the dermatologist could see the top peeking out of my mask and proclaimed Squamous Cell Carcinoma! She did do a biopsy, so I had a few days of hope. I thought the biopsy would be a smaller amount, though.
So, I put Aquaphor and a bandage on my nose twice a day…and my nose got red under the bandaid. Allergy to the adhesive? I know I’m allergic to latex, so we have plastic bandaids. Whatever.
April 21 I got the official results. The dermatologist was right the first time. Monday, April 26 I will have Mohs surgery.
Of course, I set out to watch this surgery on YouTube.
Because I always “own” all my diseases, I bought a t-shirt which I will wear proudly. Of course, it has a butterfly and the words: “They whispered to her – you cannot withstand the storm. She whispered back – I am the storm.” and Squamous Cell Carcinoma Awareness.
I have so many t-shirts – not just for places but for causes, diseases, work, piano teaching… I hope this is the last non-fun one I get!
I am not anticipating any changes in this over the weekend so the next post will be sometime next week, after the surgery.
This is a continuation of an ongoing knee issue. It started in 2013 with Icy Days and Mondays and Bee’s Knees I’m hoping to end my knee pain in the very near future.
What’s happened since the “quick kneecap recap” below:
First of all, came this article. I’d already decided to get only one – max 2 – injections a year, with one of them being a week before a cruise. Our cruise scheduled for June most likely will not happen – neither will our trip to see the Edinburgh Tattoo again in August.
I had been keeping up with water aerobics and the hot tub until both of those were canceled due to COVID-19. So, my knee pain gradually started getting worse again. Luckily, I’m not walking around so much and we don’t have stairs at home. About 8 months or so ago, the pool opened up for water walking and lap swimming – with lots of rules, of course, but I manage to go about 3 times a week. Often DH goes with me. Unfortunately, the hot tub isn’t open
I’m still having lots of meetings on Zoom as well as piano teaching. For those meetings, I’ve been using an iPad on a music stand. To be able to see well while sitting on the sofa, the stand and iPad need to be almost vertical.
My last steroid injection was in September 2019. Thanks to COVID, I haven’t been hardly anywhere so no real (k)need.
However!, New York City has lifted it’s quarantine restrictions, so we’re going to go meet our new grandson…and I need an injection before we go.
Monday, April 5, I got that injection – and a lot of hope, finally. For my fourth injection, I had a fourth different doctor. This one had other options for me that no one else had every suggested. A long-lasting gel injection, a saline/dextrose solution (I said it sounded like salty sugar water!)
On Monday, he actually used Ultrasound to guide the needle in. He went about 2 inches above the knee from the outside to get the the inner part. The others didn’t do that – they just went directly into the knee, just guessing where to send the steroids.
It was so cool watching him do this. I told him my last injections had lasted maybe a couple weeks and he said they should be much longer than that, which is why he wants to try the gel injection (hyaluronan (ORTHOVISC) 30 MG/2ML injection 30 mg) in the summer. Apparently, it takes several months to get insurance approval – and he already started the paperwork!
I had the usual extra pain on Monday night (took 3 Tylenol), and normal pain on Tuesday, Wednesday, I was feeling pretty good but had to skip the pool because you can’t go in for 48 hours after a knee injection.
I am just so happy to see other alternatives to steroids – or surgery.
I checked the weather and found that school was starting late because of icy conditions. I put on boots and took the dog out. It seemed to be raining – if it’s raining, it must be warm, right? So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice. Next thing I knew, I had fallen on one knee, my cellphone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.
I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.
Around January 27-28, 2016, I was in Walmart and had to get a produce bag that was way over my head. I had to stand on tiptoe…and my knee felt like something ripped. Thankfully, I had a cart available to use as a temporary crutch.
Got home, used the brace, took Tylenol but the pain got worse.
Thursday, I drove home from choir at church. My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.
Friday, we went to the Limp-In Clinic in Greenbriar. That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs). He prescribed Vicodin and sent me for an x-ray.
January 31, 2016, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.
February 2, 2016, I went back to the clinic for the results of x-rays and I mentioned the itchiness. Since I have very limited meds available to me, he recommended an Orthopedist. I called him when I got home and he didn’t take my insurance. I tried another doctor who supposedly took my insurance but they didn’t.
February 7, 2016, I really needed the sleep so I took half a Vicodin. No pain and no itching. HOORAY!
February 8, 2016, I saw my regular doctor. She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.
I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.
She referred me to Physical Therapy (PT) and prescribed Ultram. As of this writing, I haven’t used that yet.
February 11, 2016, 8:30 am My first appointment with PT. Since my blood pressure was high, we mostly did assessments. I had a main therapist and a student. They had to use 3 types of BP machine to do this.
I bent my knee and they took measurements with a caliper. I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.
A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.
After this, there was more pain than before but I know this is the right thing to do.
February 13, 2016. My leg feels a bit better. I had the brace off last night and almost straightened my knee out.
Somewhere in this period, I learned how to manually move my kneecap (patella) around. I saw my day 1 therapist again and he said my knee was angry. Swollen, angry, whatever. I just want a normal non-hurting knee!
One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent. So she manipulated that back into alignment.
February 22, 2016, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left. I didn’t remember doing that before but she said I had. Hmmm…
That hurt too much so we moved to a foam roll under my knee. It was still uncomfortable but I did it, a bit too much, apparently.
Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.
“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…”
February 25, 2016, My VMO pain still hurt. I told my regular therapist about it and she worked on it some. She concurred that my knee was swollen.
February 26, 2016, I went all day with no brace at all!! A bit of pain but manageable.
February 28, 2016, and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.
I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me. I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.
March 8, 2016 at 9:48 am
Physical Therapy is sapping what little energy I had
I can tell it’s working but I am even more exhausted all the time. I’m taking extra Cortef but it’s not enough…
My left knee is still bothering me, even after doing Physical Therapy since January. <sigh>
It seems to get better, then something happens and it’s back to pain again. When we were on a trip to New York a month ago, we walked a lot and climbed so many stairs, I had to buy a new brace.
Today is supposed to be my final PT but I don’t think I’m ready.
When this clinical trial came to my email, I just went through the whole survey for this but there was no doctor nearby:
Osteoarthritis Research Studies. Knee and hip arthritis studies enrolling now. No-cost medication. http://curec.lk/1VL5hu9
Fast forward to September 5, 2018
My knee has been bothering me off and on for a while. I’ve been taking water aerobics and was careful not to do anything that would hurt my knee. The hot tub afterward was a great place to aim hot water jets at my knee – that would numb any pain for a while.
I realized that the neoprene braces were making me itch so I actually found one with no neoprene – Hooray! “All BioSkin material is hypoallergenic. Latex-free and Neoprene free.” Hooray again!
This last week or so, the pain has been getting worse again so I decided to try a new doctor. This one seems like maybe – just maybe – he’ll fix things.
He said: “Your previous knee injuries made sense for pain but this spontaneous onset of medial knee pain is a bit strange. I can only do a limited examination due to the pain and difficulty bending, but it seems to be over the distal insertion of the VMO (quadriceps muscle) with possible inclusion of some joint line tenderness on that same side.
I’d like for you to use ice packs in your knee brace at least three times a day with the goal of calming down the inflammation.
My goal with getting you to sports medicine next week is to re-evaluate it, hopefully with better ability to examine and flex. It may need ultrasound evaluation and/or steroid injection. Since you cannot take NSAIDS, I suggest trying the Ultram that your previous doctor gave you so you can sleep.”
So, next Wednesday, I have an appointment with sports medicine – I might be moving forward. Or not.
September 12, 2018, I got my first cortisone shot (Kenalog 40 mg/mL suspension for injection). I did notice some sleep issues that first night, probably since I had the cortisone so late in the day
It was wonderful and got me through a cruise to Maine and Canada. In Bar Harbor, I overheard some women talking about their knees. One said that the cortisone didn’t work for her at all and she was going to have surgery <uhoh> and another said that they’d have to cut the nerves around her knee. I’ve asked a couple doctors and Dr. Google. No one seems familiar with that idea at all.
It also got me through our son’s wedding in October, including climbing stairs!
It also produced one of my only smiling photos, ever!
December 5, 2018, I saw my endo, Dr. Roberto Salvatori, and “confessed” that I’d had this injection. We’d talked about this before and how it might react with my daily Cortef and Omnitrope shots. He hadn’t thought I should get this. But, since it was a done deal, he said to monitor how I was feeling with the additional cortisone.
By then, the knee pain had returned, anyway, so no issues.
March 27, 2019, I found a new no-neoprene, no-latex brace on amazon. “Hinged Knee Brace: Shock Doctor Maximum Support Compression Knee Brace – For ACL/PCL Injuries, Patella Support, Sprains, Hypertension and More for Men and Women” This is very good – much stronger than the one I mentioned below on September 8, 2018. The only real issue I have with it is that it bent, so I have to bend my knee to put it on. The other one is completely straight and just wraps around.
The older, wrap-around does have a tendency to slip sometimes so I make it tighter than I probably should.
I do love that they’re making products for people with latex and neoprene allergies, though!
April 8, 2019, I was supposed to get my second cortisone shot in time for Easter but there were car issues at the last minute.
On the way to water aerobics, I was having trouble shifting my car. I’d have to actually turn the ignition off to do so.Not fun!
When I got home, Tom was sure he could do it…but he couldn’t either.He drove it into Advanced Automotive.
One of the Advanced Automotive mechanics test-drove the car and then found the bolts holding the brake master cylinder to the firewall had loosened.
Could have been even more serious!
They fixed that for free since they were the last people to work on the car and maybe(???) didn’t tighten the bolts completely the first time.
Car runs like new now 🙂
So, I missed my first appointment but got a “new” car.
April 10, 2019, I broke down and bought this leg pillow. I’d seen similar ones on TV but I got this on amazon (of course!). Aocome Knee Pillow for Side Sleepers Knee Pillow Ergonomically Designed for Back Pain, Sciatic Nerve Pain Relief, Leg Pain, Pregnancy, Hip and Joint Pain – Memory Foam Leg Pillow.
This is one of the better things I’ve gotten in my journey. It’s very nice, soft – and blue!
I’m of 2 opinions about the little strap – it makes it easy to keep it “attached” to my knee but I have to bend my knee to put it on in the first place.
I think over time, the elastic may stretch out, making it harder to keep on.
The whole is covered with a washable velour-like fabric. The price was reasonable enough that I could buy another one if/whey that strap expands too much.
I have a tendency to roll over in my sleep and found that I can use it as a little pillow to raise just my left leg instead of between both knees when sleeping on my side.
I also found that it’s sometimes better to sleep on the sofa. When I roll over, the pain from my knee often wakes me up again. Lying on the sofa makes it harder to roll over.
During this time, my pain was so bad that I was considering surgery – later.
April 22, 2019, I got my second cortisone shot (Kenalog 40 mg/mL suspension for injection). This time it was a new doctor (same practice), so I had to explain everything (knee history, Cushing’s history, kidney cancer history) to her.
I was unsure how often I could get his shot because I knew I’d want/need one before our cruise next September. These look like places I will want to walk!
She said that the cortisone stayed mostly in the knee area so I could get one every 3-4 months! I could have saved myself a lot of issues in early 2019 had I known that So, I’ll go in the early part of September for #3 and maybe go on a 4-month schedule.
For reasons known only to her, she did the injection in my inner knee-cap. Even with the lidocaine, it was a bit more painful there than I remember the other one – or maybe I just blacked that out.
She thought that the water aerobics I do 3 times a week (plus hot tub afterward) was a good thing.
Death Dreams. I don’t think I’ve posted about these before but I used to have them quite often. I hadn’t had any for a long time but I had 2 within 12 hours of getting the injection. The first was about 6:00 PM. I’d fallen asleep for a nap and DH was talking to me (in real life). I kept trying to ask him which Easter service (that had been the day before) was coming up next because I needed some kind of medication to get through the service. I know my words to him were confused and garbled but I was sure I was going to die if he didn’t help me.
The next was similar about 3:00am on 4/23/19. I dropped my Kindle on the floor, which sort of woke me up but I wasn’t sure what the noise was. I just knew I needed to take “something” to stay alive and wasn’t sure what that was. I looked through my phone for ideas and checked the meds by my bedside. Nothing. Finally, I woke up more completely and realized it had been another dream. I also picked up my Kindle and went back to sleep for another hour.
This morning (4/23) there’s still a bit of discomfort but I can deal with that. I also had a bit of trying to run to the bathroom a little quicker than usual. I also don’t remember that from before but I assume it will go away soon.
I hope this shot lasts nearly 3 months, too! That would take me to mid-July. 🙂
I also hope that my sleep gets better than my March-April records with only one 8-hour sleep (counting naps!).:
Starting September 2, 2019, if I get 4 shots a year they would be: September, December, March, June, September.
Starting September 2, 2019, if I get 3 shots a year they would be: September, January, May, September
After my April 22, 2019 injection, things were mostly better for a while.
May 12, I went to a Celebration of Life service where the chairs were so incredibly uncomfortable. They looked really nice but… I had trouble sitting. I’d have to bend part way, put my arms on the armrest and fall the rest of the way. While seated, it was a weird angle, so I didn’t like to sit but standing back up was very difficult. My knees were stiff and painful through the next week.
Things were okish for a while.
June 7, we went to NYC and did a lot of walking/stairs which always makes things a little worse. Around this time, my right leg started having an aching (bone?) pain. I’m hoping that it’s “just” sciatica.
June 18, it was time for another stupid accident. I got home from work, put my car in gear and the emergency brake on. I stepped out of my car with my left foot planted on the driveway. Somehow, the car rolled backward, twisting my knee. Three Tylenol and a brace. Of course, it was one of the braces I’m allergic to so I then had to take a Benadryl. I’ll find one of my non-allergenic braces a little later.
June 22 – back to “normal” knee pain. Rest, keeping my knee up, a non-allergenic brace and Tylenol all helped.
In mid-August, 2019 my knee started getting really uncomfortable again. The brace I’d bought for latex and neoprene allergies on March 27 was too hard to put on because I had to bend my knee to pull it up. so I bought a wraparound one from the same company.
September 2. I was sitting on the sofa and went to straighten out my leg to put on a footstool. Major owee. On went the brace and three Tylenol. I may be saving my one kidney by not taking other pain meds but I’m not sure what is going to happen to my liver 😊
September 4. Hooray! The next injection with yet another doctor. This one, I know, though. She’s my mother’s doctor and the reason I go to this practice in the first place. When my mom was in the nursing home last year, this is the doctor they sent. She saved my mother’s life. I had been complaining about my mom bleeding internally and the nursing home basically said “someone will check”. I got Dr. Vo in there and my mom immediately left for the hospital where they took care of the bleeding. Who knows, if I’d let her stay in the rehab/nursing.
I have no idea how she’ll do with knee injections, though
Actually, she did wonderfully well. We started with the traditional PA, Jack, who asked the traditional questions, did the weighing, blood pressure, temperature. He asked if I could have a medical student come in and I said oh yes. I’d definitely used to helping out with med students thanks to my many weeks at NIH.
David, the student, came in and asked similar traditional questions. Then, Dr. Vo did the same.
Then, all 3 of them were there along with DH and my knee. A little cramped but it worked. She did a really good workup, Apparently, my patella isn’t moving as well as it should. As always, they say my left knee is swollen but I can’t see that. According to my pain when she pressed various places, she thinks I have a small tear (Patellar tendon rupture) She was the first person to ever mention this possibility. Years ago, another doctor thought it was a possible “lateral collateral ligament vs meniscus tear”.
January 28, 2013, I checked the weather and found that school was starting late because of icy conditions. I put on boots and took the dog out. It seemed to be raining – if it’s raining, it must be warm, right? So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.
I had fallen on black ice and had been wearing flannel-lined jeans. Still got banged up a bit!
Next thing I knew, I had fallen on one knee, my cellphone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself. Luckily, I hadn’t let go of the dog’s leash.
I ended up sitting in a puddle of icy water for a long time, figuring out how to get up. I finally sort of crawled up the trash can that was sitting in the driveway.
The dog had an abbreviated walk, I changed my wet, cold clothes and headed to the hospital. I was showing DH my knee and one of the staff bandaged it up for me. I told him I hadn’t fallen at the hospital and wouldn’t sue but I guess he wanted to be sure.
(February 18, 2013, my knee still had a huge lump under the skin and hurts when I touch it, although I’m no longer limping, The bruise/pain from cellphone finally went away)
~~
Back to 2019: Risk factors for Patellar tendon rupture include patellar tendinitis, kidney failure (DUH!), diabetes, and steroid or fluoroquinolone use (DUH, again – taking daily steroids, Growth Hormone and 2 previous Kanalog 40 shots). There are two main types of ruptures partial and complete. In most cases, the patellar tendon tears at the point where it attaches to the knee cap.
After all that, she showed the PA and med student how to find a good “line” for the needle to go into. The injection includes lidocaine so it doesn’t hurt so much going in and kills pain fairly quickly in the knee.
She made a little circle with a marker (the others did this, too), the PA really went to town with the spay antiseptic, including my sandaled feel. She did quite well with the injection. Tom said she hit the circle exactly. There was a bit of discomfort when she hit/nudged something in there but it was fast.
As the first injection, this was on the lateral, outside, part of my kneecap. The second was on the inner part. I mentioned this to everyone, commenting that the second (medial) didn’t seem to work as well as the first. I’d told the second doctor my pain was more on the inner side, so maybe she was going by that. It’s my theory that the needle went right by the pain but what do I know?
More spray and a bandage. They told me to move my knee around a lot before I could leave. This was a first. I used my time to go to the ladies room. LOL
She gave me some exercises to do at home, some similar to what I do in Water Aerobics (Hooray!) which I have done for several years. Both she and past doctors have said that’s one of the best things I can do for this. However, I have to stay out of the water for a few days to be sure nothing gets into the injection site.
Dr. Vo also prescribed a tube of Voltaren 1 % topical gel to use as needed on our upcoming cruise. This cruise is one reason I wanted to get the injection now.
She’s recommending 3 times a year group for this injection – the last doctor said 3 to 4 times a year. I don’t want to get into the steroid-induced Cushing’s group so I’m trying for 3 (or less) times. Starting September 4, 2019, if I get 3 shots a year the next Could be January, May, September.
So far, the last 2 were September 12, 2018 (If it were not for the cruise, I could have held out a bit longer to make it more than a year since shot 1!)
Shot #2 was April 22, 2019.
Current #3 was September 5, 2019
The following list includes any diagnoses that were discussed at your visit.
1. Osteoarthritis
• arthritis: care instructions
• osteoarthritis: care instructions
• Voltaren 1 % topical gel
• Kenalog 40 mg/mL suspension for injection
• injection/aspiration large joint/bursa (PROC)
2. Tendonitis of left patellar tendon
Patient Instructions
Knee osteoarthritis – Discussed treatment with exercises. Continue water aerobics.
Knee injection done today.
Exercises given to strengthen patella tendon at home after pain improves.
Like 4/23/19, I also had an issue trying to run to the bathroom a little quicker than usual. Actually, twice.
September 5, 2019. I was sorry that I fell asleep quickly and didn’t get my watch off the charger but I know that I slept until 4:35am
Often, i’m tossing and turning to get my knee comfortable, even with the knee pillow from April 10, 2019. I broke down and bought this leg pillow. I’d seen similar ones on TV but I got this on amazon (of course!).
This is one of the better things I’ve gotten in my journey. It’s very nice, soft – and blue!
I have a tendency to roll over in my sleep and found that I can use it as a little pillow to raise just my left leg instead of between both knees when sleeping on my side.
I also found that it’s sometimes better to sleep on the sofa. When I roll over, the pain from my knee often wakes me up again. Lying on the sofa makes it harder to roll over.
When I woke up at 4:35, I did have to get to the bathroom quickly but it was ok. Later, about 6:00 it wasn’t so good 😊
Later in the day, I was still limping a bit, perhaps more from habit than anything else.
A bit of pain on the inside of my knee but nothing that required a brace OR Tylenol.
I ordered a new travel container for my growth hormone. The last “system” was kind of clunky. It worked fine but required too many components. This one looks like it will fit in the water bottle compartment of my backpack. I definitely don’t want another failure.
I fell asleep almost immediately, but woke up about 12:30 and never really got back to sleep. I think I’m obsessing about what to pack for the trip and getting all my work done that should be done before I go. Also, an ear work of a handbell piece we’re working on.
September 8
I got 6 hours sleep last night! 7. 37 with a nap. WooHoo!
September 9
The big pains are mostly gone. Every now and then will be a little twinge. Yesterday, I felt a little unstable on my knee but nothing major.
I think I’m ready knee-wise for this cruise.
September 12
I had a new type Death Dream last night but I doubt that it’s related to the injection. In this one someone was coming at me with a knife. Hopefully, this was a one and done!
So, I’ll post this just before the cruise, then, the next update will be…later.
April 14, 2020
First of all, came this article. I’d already decided to get only one – max 2 – injections a year, with one of them being a week before a cruise. We currently have a cruise scheduled for August, but that may not happen.
I’d been keeping up with water aerobics and the hot tub until both of those were canceled due to COVID-19. So, my knee pain gradually started getting worse again. Luckily, I’m not walking around so much and we don’t have stairs at home.
I’m having lots of meetings on Zoom as well as piano teaching. For those meetings, I’ve been using an iPad on a music stand. To be able to see well while sitting on the sofa, the stand and iPad need to be almost verticle.
After one meeting a week ago, I moved the unit out of the way, the iPad slipped off the stand and the edge whacked the top of my kneecap. Major owee and a few bad words, Tylenol and a knee brace.
I ordered a new travel container for my growth hormone. The last “system” was kind of clunky. It worked fine but required too many components. This one looks like it will fit in the water bottle compartment of my backpack. I definitely don’t want another failure.
This “bottle” fit perfectly in the water bottle compartment of my backpack.
Going through TSA, I told the woman outside the scanner that I was carrying this and had paperwork. She handed me the paperwork back and put the Dison in a separate container to scan.
I went through and a TSA agent told me very rudely that I should know that I wasn’t supposed to carry liquids. I explained again that it was refrigerated, prescription medicine and I had paperwork. He had me get over to the side while he called in another agent and they started inspecting everything. The new agent said that they had never seen anything like this. There was a little thermometer on a longish strand (I wasn’t using it) but apparently, it looked like a way to detonate the whole case. After a lot of swabbing, discussion and annoyance on my part I was allowed to leave.
I decided that I will never fly with growth hormone again. It is not worth the time and hassle to me.
This case will be fantastic for train/car/walking/anything but flying.
I had previously found a smallish sharps disposal container, although this was still kind of big for my needs, it was better than taking the whole huge one that’s in my bathroom.
As it turned out, I only needed it in the ho(s)tel in Copenhagen. The cruise had a sharps container in the bathroom. I had noticed that on a previous cruise and was so glad to see that they are providing this service.
I carried the actual sharps separately in my checked baggage.
After 12 hours at 8:15am Copenhagen time (2:15 pm at home) I finally removed the growth hormone from the bottle. The ice pack was still pretty hard and the GH was still cool. Next time, I’ll try the little thermometer thing (I need to charge the batteries first) and see how accurate that is.
A good solution except for airport issues. Did I mention that I will never fly with GH again?
Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary. I had some issues after my first COVID-19 injection (Moderna) but not too bad. My second injection was March 15, 2021. This time I was smart and updosed on my Cortef (hydrocortisone) right after the shot. My main side effects this time were chills, extreme thirst, fatigue…and a craving for salad(!)
Earlier in March, CVS sent out an email with a few questions to answer before confirming my March 15 appointment. On March 14, they sent me a text and when I clicked on the link, it said I had answered all the questions already. YAY
I got this information again from CVS:
On the day of your appointment:
•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.
•Bring your ID and insurance card, voucher or other coverage
•Don’t forget a face covering—wearing it throughout your visit is required
•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine
CVS tips for vaccine shots:
•Wearing short sleeves makes getting a shot easier and faster
•If you must wear long sleeves, dress in layers with the short sleeves underneath
•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.
Monday, March 15, 2021: When I got to CVS, I found that everything was very well run like before.
I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.
This time I wasn’t met by anyone at door but I knew from before where to walk following arrows on floor. Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).
There were 2 people ahead of me that I could see.It went very fast.I was in the little partitioned off area within less than 10 minutes.
The nurse asked if left arm was ok to use.
The shot was not quite as fast – I felt it a little but I am used to giving myself daily injections so this was no biggie..
The nurse said if I get a headache, take Tylenol only. She also said to stay hydrated.
I sat in the waiting area for 15 minutes to be sure there were no problemsThere were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.
This time I was smart – right after leaving the CVS I took a stress dose of Cortef (hydrocortisone).
Around 7 pm i noticed I had what I used to call a “lightning bolt headache”. There is pain in one spot of my head and it moves quickly down, through my brain and out. I used to get these long ago and I didn’t even know they were a thing until I just looked them andy they are called “Thunderclap Headaches”:
Severe headaches that appear suddenly like a lightning bolt are a cause for concern. This isn’t a sharp pain that goes away as suddenly as it began, but a pain that comes on like a light switch or feels as if someone has hit you in the head with a hammer.
Who knew – I thought I’d made them up. I hope this was the only one.
I could not believe how thirsty I was for the first couple days. My mouth felt like a desert so I drank lots of ice water which meant I needed to run to the bathroom a lot. Sometimes, I didn’t quite make it.
About 10 pm I started being very cold. I don’t know if that’s a symptom but I noted that on February 17, also.
My arm seems like it is more sore than last time.
About 3 am, I got up needing to get a drink of water and I was still so cold. I was under 3 blankets, wearing a hoodie and a very warm knit cap. I didn’t have the death dreams like last time but some that were work-related and all jumbled up. This has to get done before that can, but then, this other thing happens, type thing. I just got up, got a little hydrated and checked my emails.
As soon as I typed this sentence, I put my mittens back on.
Tuesday, March 16, 2021: My arm was sorer than Monday and I was still feeling cold, sleeping off and on. Still very thirsty.
I skipped my growth hormone injection again.
I had trouble sleeping, especially if I tried to roll over.
Wednesday, March 17, 2021: We didn’t go to water exercise. I planned that this time, based on my reaction to the first shot.
I had a little headache, dizzy, congested, very tired, lots of brain fog, thirsty.I slept more until about 1 pm and I cancelled piano lessons for the day.
After cancelling lessons, I went back to sleep. I was feeling cold but I don’t know if it was chills or really a cold.
At that point, I realized I hadn’t eaten for 2 days or had any coffee!.
For reasons that are very strange to me, I started craving tossed salad, specifically one from a certain local restaurant. I have never in my life craved salad.
I had some dinner (I was surprised that I could eat any) at 9:25 and did my growth hormone injection.
I went to bed at 11 pm. Tossed and turned all night.
Thursday, March 18, 2021: I’m a little more tired than usual but ok. I spent time napping and working alternated through the day. My boss called and he’d just had his Johnson and Johnson shot on Tuesday. The call was pretty funny because we both were brain foggy and trying to think of words. His vaccine is the one-dose type – he was glad to get it but found it weird that he could actually feel the medicine going in. That sounds to me more like it was injected into a vein than a muscle.
My DH went out to Domino’s and got some dinner – and finally, I got that salad!
Friday, March 19, 2021: Just the normal tiredness. Hooray! We went back to water exercise. I took off my bandage for the first time and noticed that the site had bled a little. Oh well. While I was in the pool, I had another of those lightning headaches but didn’t get out of the pool for Tylenol because I knew it was quick.
Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.
In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.
A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.
Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.
Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.
The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.
A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.
Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.
This is very good – much stronger than the one I mentioned below on September 8, 2018. The only real issue I have with it is that it bent, so I have to bend my knee to put it on. The other one is completely straight and just wraps around.
This is one of the better things I’ve gotten in my journey. It’s very nice, soft – and blue!
MaryO'Medical 