Okay, this is it. I’ve been fussing for over a year about writing a series about science, biology, medical decisions, and navigating safely through a world of alternative medicine and treatments. I’ve come close to launching into a block of mini-rants before, but never went there because it would just take too much energy…
June is Scleroderma Awareness Month. As luck would have it, June has also arrived as I sail back into calm waters following a 6 week storm set off by worsening symptoms, medical testing, and finally a collaborative consensus between my doctors and myself based on data that informs a new course of treatment. In other words, science, biology, and data-driven medical decisions have saved the day. I have lived a life of science in my educational and professional life and this training and way of thinking continues to save the day for me. I do have other skills, of course, but the foundation is always based in science.
I guess I think that it is time for me to share in case it helps anyone else.
This month I am better. This month my energy is coming back, ideas for topics are swirling in my head, and I think that the time has come. I’ve started a planning grid with all of my topics and resources, and things are starting to come together. Since June is Scleroderma Awareness Month, this is the month that I should do this. If I can put this all together, there will be a post each day this month. With Star Trek quotes, of course!
My poor physician team. I come to see them with a whole host of complaints at every appointment. I can see then mentally sorting the symptoms into piles as I talk :
important, needs to be investigated immediately.
sad, but part of the life of a patient with this chronic condition.
these are issues that should be passed on to another member of the treatment team.
irrelevant to the current diagnosis.
For three years I’ve been mentioning my muscle problems. My muscles are sore to the touch, and they just burn sometimes. The burning can go on for days, and I do get a little cranky; okay, maybe some wailing has occurred. Poor cats! It is really painful at connection points around joints. Stamina is poor, and I’m exhausted all the time.
Some of these symptoms can be explained as being part of the whole scleroderma thing. Muscle issues are rampant with scleroderma as some of the necessary enzymes for muscle movement are too low for reasons that aren’t clear to me. My rheumatologist has checked for polymyositis and other serious muscle problems, but my muscle strength is good and my test results have been normal. I’m in pain, but my muscles aren’t being damaged. I have been just managing with heat pads and knitting as there seemed to be nothing that could be done. To make things worse I can’t have anti-inflammatory drugs or painkillers because my kidney function is low. Bad muscles, bad!
At my last visit with my rheumatologist I was really sore to the touch, and she suddenly asked if I was experiencing brain fog…
Oh my lord, yes! It is so bad I’m afraid to drive sometimes. I struggle with anxiety and some depression when things are bad. The fatigue is off the charts when this is going on, and I can’t get good sleep. Lately I have developed headaches too…
“Oh. This is fibromyalgia“, she said. Just like that the light had gone off for her; my symptoms were suddenly sorted into another pile that screamed “fibromyalgia”. She did a quick assessment, and the diagnosis was added to my chart lickity split…
I also have Sjogren’s Syndrome, and the symptoms of fibromyalgia and Sjogren’s do overlap, but it would appear that I have both. No wonder my fatigue has been so extreme.
So, nothing has changed, but at the same time everything has changed. I have concrete reasons for feeling so bad. My blood pressure issues have improved, and I am able to walk and exercise more. I’m using my inhaler every day and my blood oxygen levels are coming up. The more I move, the better I feel. Little by little, I am getting a handle on things again. I am sleeping like a rock and I wake up feeling pretty good.
My terrible twosome of autoimmune diseases just became a triad, and I am actually feeling more hopeful about my ability to manage things. Take that, you three! I am coming after you all with a pitchfork!
Err… make that knitting needles. I’m coming for you all the same. Be warned, I am taking you down!
It has really been kind of a rocky month. Following several episodes of shortness of breath, chest pain, heart palpitations and blue lips my doctors decided that I was due for a full round of testing. My primary care physician ordered up a battery of cardiac testing and sent me off to see my specialists.
I really like my pulmonologist. She is thorough, direct, and answers all of my questions without sugar coating things. I had chest pain in her office and while I was talking to her my lips turned blue right on cue. Wow. It’s like having a trick pony that performs for the audience! We talked about the possible causes, all of which were pretty serious heart conditions, and she decided that I needed to complete my cardiac testing before I did her pulmonary function tests.
I’m not going to lie, it was sounding pretty serious. She thought that I either was developing heart failure, pulmonary hypertension (a fatal complication of scleroderma), or my heart was being starved due to blood vessel constriction.
Next up: my rheumatologist. We discussed increasing my immunosuppressant dosage to crush my Sjogren’s, which has been pretty active, into submission. She hated to up the dosage unless there was no other choice due to the risk of infection, especially since she thought that it was probable that I was experiencing pulmonary hypertension symptoms, and that meant that the pulmonologist should be the lead on treatment.
What was needed, clearly, was some test results to clarify the situation. And knitting. Lots of knitting.
Are you familiar with Holter monitors? That’s the test where you are hooked up to sensors and wires that go to a device that records your heart’s electrical activity for 72 hours. 72 long, itchy, forced to sleep on your back, OMG, how did this sensor get attached to my hair, hours. Whew. It was done. The results: my heart was normal. Still short of breath and feeling dizzy, I went back to knitting.
Next up was the echocardiogram. Dizzy and feeling faint, I went for the test one morning last week and then headed on over to my LYS for some knitting action. Following my BKB Deb around the store looking for the yarn to knit a Tegna sweater I felt faint and ended up sitting on the floor at one point. This was getting ridiculous! Especially since the technician who did the echocardiogram test told me that she thought I would be very happy with the result…
I began to wonder if the problem could be my blood pressure. After years of battling hypertension that was hard to control I was posting some really low numbers at my checks. Maybe I was getting too low?
I did a little searching on the internet, and discovered that there was some research that suggested that it was important to keep diastolic pressure above the 60s. Oh. I was often in the 60s. Maybe I was sending my pressure down too low every time I took my morning medication. My doctors were so happy with the current numbers, but maybe things had changed. Maybe I didn’t have hypertension any more… maybe the pulmonologist was right about the blood starved heart, but it was due to low blood pressure. I decided that I should check my pressure every morning before taking my meds.
I skipped my meds and started recording my pressure readings several times a day. The chest pain and dizziness disappeared. I sent an email to my primary physician with the BP log attached and we set an appointment to talk yesterday as she had just received the echocardiogram results.
Surprise!! My heart is in better shape now than it was at the time of my diagnosis. My pulmonary hypertension is gone and my heart is now pumping normally. She agreed that my high blood pressure seems to have reversed and that the medications that I have been taking are too much for me now. We agreed to try a quarter dose for a few weeks to see what happens.
The immunosuppressant drug that I am taking has been shown to reverse scarring in lungs, and the high blood pressure drug that I was taking (in too high a dose) also may have positively impacted my heart. My skin isn’t as tight as it was a couple of years ago; it looks like my blood vessels are also now in better shape. Less stiff blood vessels means lower blood pressure. Yay!!
My doctor thinks that the drugs have caused these improvements.
My neighbor, who mows my lawn and prays for a miraculous cure, is sure that God has intervened.
The Mother of Cats has been a severe disappointment for just weeks and weeks. She caught some kind of cold early in December, carried on like a baby for over a week (nasal spray, salt water gargling, boxes of tissues… Yellow Boy and I became quite concerned about her mental health…) and COMPLETELY ignored our needs. As if that wasn’t enough, when she finally got over the virus, she then became even worse. She slept for hours and hours, stayed in her bed even when she was awake, and totally failed to deliver our cookies on time. SHE DIDN’T EVEN DO CHRISTMAS!!! which is totally our favorite time of the year. Hello… Christmas trees = world’s best cat toys. How could she have failed us this way?
She said she was in a flare. Whatever.
When she was awake she worked endlessly on these socks for her cousin’s Christmas present.
The Turkish Hell socks were packed up last week and mailed out. On Saturday, the last day of Christmas they arrived safely in their new home. They had better behave themselves and last for years and years; I would hate to travel all the way across the state to whack them into shape!
I’m such a good boy.
Can I have some cookies now?
Notes from the Mother of Cats:
These socks, called Classic Kilim, are from the book Around the World in Knitted Socks by Stephanie van der Linden. The socks were supposed to have tassels and embroidery; that so did not happen!!Here is the info on Ravelry with more info about the book. My notes on Ravelry are here.
On December 1st I got my pneumonia vaccine even though I had been struggling a little that week. That night my youngest son became ill with complications of diabetes and was rushed to the ER . I spent the next 2 days/nights at the ICU with him. Yep. About the time my son returned to work and I moved back home I was sick; my autoimmune diseases flared while I was fighting through the viral illness. My Sjogren’s symptoms have been off the chart and crushing fatigue and brain fog appeared along with them. This week I am better and have been knitting up a storm and planning blog posts. Hopefully I’ll be online again in a couple of more days.
This is it. I’m pretty sure that I am back. Right after Christmas I got sick with the flu, one thing led to another, and I was taken off the drugs that I take to treat my systemic sclerosis (scleroderma). Yep. My autoimmune condition flared of course. Two weeks ago I was finally cleared to start my immunosuppressant drugs again.
Hello energy! Wow. This week a surge of creativity arrived. I was up and pulling together projects right and left while cleaning house (and putting away the Christmas decorations). About freaking time, huh. My poor yarn stash had started to despair. The loom was considering contacting an adoption agency (that darn spinning wheel put it up to it. He has always been a trouble maker…). Even the car was becoming depressed.
My energy level has come up just in time. Three weeks ago my internist sat down with me and gave me some bad news: I have developed symptoms that suggest that my lungs are now under attack and becoming scarred. I kind of expected it as I have been having shortness of breath episodes, but still it isn’t a good development. I made an appointment with the rheumatologist. Yesterday I saw him, he decided to increase my drug dosage, and he also ordered lung testing for next week. When I came out the door from the clinic the wind was blowing, the sun was shining, and I was happy to be alive. No matter what happens next week, this week I am full of energy and feeling pretty good. Got to love these drugs!!
So I decided to not go right home. I went shopping!! Hello! The rheumatologist is located in a city north of Denver near a major yarn store, Shuttles, Spindles and Skeins in Boulder, Colorado. I have needs. The loom is making threats…
I found the cotton that I needed pretty quickly. As I tried to walk to the checkout counter I happened to see the Dream Club kits…
While I was thinking about the bed socks the happy colors of the February Dream Club kit jumped out at me.
I don’t know how those kits jumped into my arms. It just happened. Clutching the cones of cotton for the dishtowels and the bagged kits I managed to get up to the check out counter and found…
Okay, I did find some more yarn to add to the pile, but I’m going to save it for a future post. I piled back into the car with all of my happy finds and headed south back towards home through some of the strongest wind in recent memory. Seriously, I was dodging tumbleweeds (while on an elevated overpass!) and playing chicken with wobbly tractor trailer trucks as I raced along through clouds of dust and howling 60 mph wind. It perfectly matched my mood of recklessly joyous living.
My last stop on the way home was at a jewelry store where I bought a new teal colored bead for my Pandora bracelet.
I am rocking the knitting tonight wearing my bracelet. This weekend I will get the warp wound for the dishtowels and the loom will get warped up early next week. You know I’ll be wearing the bracelet when I go for the pulmonary function testing next week.
I know that I kind of did this to myself. I was really pushing things as I got everything baked, stitched, knitted, wrapped, mailed and cleaned for Christmas. It was wonderful. My family was all here on the big day, the dinner was perfect, and it was even snowing lightly making it a true White Christmas. A wonderful, wonderful day.
I was just exhausted afterwards.
Still, I made some after-Christmas plans. I wrote out some ideas for the end-of-the-year blog post and made a list of projects to tackle in the coming weeks and months. Great stuff: weaving, spinning and quilting made the list along with the usual plethora of knitting items.
The Monday after Christmas I woke up sick. Influenza!! I had had the vaccine, but I knew that it was unlikely that I would get the full benefit because of my immuno-suppressant drugs. By New Year’s Day I literally couldn’t get out of bed. The next day I dragged into the after-hours clinic and was sent home with antibiotics and some serious cough medicine. Thus a cascade of severe unhappiness was launched. Here’s the short version: bronchitis; removal from immuno-suppressant drugs; allergic reaction to the first antibiotics; more antibiotics; a full rebellion by my digestive system; low blood pressure; dizzy, dizzy, and more dizzy; help: I can’t even manage to knit; a flare of my systemic sclerosis; and a complete helping of why can’t I breathe right yet??? There. That was the whole month!! In fact, it is still going, but I am definitely on the mend.
Take home lesson: it is possible to survive on yogurt, cranberry juice and Christmas cookies. Maybe I should write this up as a new fad diet. 🙂 It is also good to have a pile of books waiting to be read. An emergency stash of chocolate is a given, right? Oh yeah, one more thing: GET YOUR FLU SHOT, PEOPLE!!
Two weeks ago I pulled out my partially completed Daelyn Sweater (by Isabell Kraemer) and got started knitting on it again between naps. Last week I finally finished it. Oh, my goodness. What a wonderful sweater. It kind of looks like a sweatshirt…
I have to give a shout out to this yarn. You almost have to work with this stuff to believe it; it is soft, squishy and very light weight. My finished sweater is soft, warm, comfy, looks and hangs like a bulky sweater but weighs very little. It is almost a shock when I lift it to put it on. There are little bits of veggie matter in the yarn, but I think that is because it hasn’t been over processed. It was fairly easy to pull them out while I worked.
When I got ready to knit my sleeves I began to panic about running out of yarn. I ordered two more skeins online that were from another dye lot. I blended the new yarn in by knitting every other row for 8 rows (it did happen on the sleeves..) and you absolutely can’t see the change in yarn. I could have just skipped the blending. How’s that for quality control! Here are the Ravelry notes for my project if you want more info.
So, here it is whole month late but I am starting to think about my new projects for the year. Lots to do. You weren’t very nice to me at the start, 2016, but let’s see what we can get going now. Behave yourself!!