It's 3:17am as I start to write this blog post.
I made coffee, took my meds, and didn't tear up as I got out of my chair this morning. My recliner has become my new "bed". I miss sleeping next to my husband every night, but it's just not possible anymore.
My husband suggested we get "his and hers" recliners so we can both stay out in the Living Room together. We've done it before, but the last time we camped out together, he had just gone thru and emergency back surgery due to a ruptured disc, and I was 9 months pregnant with our youngest, Mello.
Back then, it was a full sized futon that we squeezed on to with a needy German Shepherd.
After Mello was born, we moved a pack and play with a bassinet insert right next to the futon, and the Living area became a bedroom. There, I could take care of the middle of the night feedings, and keep my husbands medicine schedule covered. Our house was less than 700 Square feet! (I actually miss that. I could vacuum the whole house from one outlet!!!)
That was 2 1/2 years ago. Unreal.
Since then, we have lived in 3 different places, survived homelessness, and realized that FAMILY is a bond that isn't always made with bloodlines. So, I'm no longer a believer in "Blood is thicker than Water"...Sorry!
People have asked about Stiff Person Syndrome almost every day since I was diagnosed. I research EVERY DAY, and I can't find ONE single "foundation" or "association" to direct them to. Just Google!
So, what I will tell you is what I deal with personally. If you don't want to know, don't read this. This is a very REAL account of parts of typical days, weeks and months for me, and tons of people with chronic illness.
I usually don't sugar coat much, but you will see some parts of this "lightened" a bit, in case a younger person reads this.
LIVING WITH STIFF PERSON SYNDROME
Like anything else, even though I was just diagnosed, I have had this disease for much longer than the month or so that I have carried the title.
When you have symptom after symptom, and already have a chronic illness, you think of any new "symptom" as just another side effect of what you already have, or medication induced problems, or even stress.
That's exactly what I've done.
I have had a Pain Specialist for my diagnosis of Occipital Neuralgia for over a year now. About 6 months ago, I explained to my doctor that I have had problems with muscle spasms for years, but that they were gradually getting worse. Even the doctor thought my back spasms were related to everything else as well.
So, as I grew more uncomfortable, the spasm in my back actually started to bulge. It looked like someone had taken a paper towel roll and slid it under my skin, parallel to my spine on the right side. As it got worse, I wasn't able to stand up straight. I stayed hunched over like a 90 year old woman, and limped around.
It was awful. I ended up having to ASK for an MRI, because the pain had become unbearable, and I was having trouble getting around my own house. I couldn't pick up the kids, put dishes away in cabinets above my head...I was frustrated. I was convinced I had herniated a disc, or pinched a nerve.
I have become somewhat of an "expert" on herniated discs, because my husband had one for years. After 2 years of conservative treatment, ie; PT, epidural injections, steroids, he RUPTURED his disc.
How? Well, we were in an elevator, it went down, and right before the doors opened, it dropped about 3 inches. My husband went into shock the pain was so bad, and he was in Emergency Surgery 2 days later for a Micro-Discectomy.
The MRI (L and T spine) came back with just evidence of severe spasms, and 2 herniated discs. (This was ODD to me, because I had no "trauma" in order to herniate discs.
My C-Spine MRI (my neck) was the most telling. The doctor said he had "never seen a neck so straight". Apparently thats a BAD thing. The spasms went from my neck to my hips, and hurt like hell!
So, I was put on a regular regimen of muscle relaxers, and went in for a few epidural procedures to relieve some of the rigidity. That helped a little. I was at least able to stand up straighter!
(need to finish this later....meds are kicking in...)
I made coffee, took my meds, and didn't tear up as I got out of my chair this morning. My recliner has become my new "bed". I miss sleeping next to my husband every night, but it's just not possible anymore.
My husband suggested we get "his and hers" recliners so we can both stay out in the Living Room together. We've done it before, but the last time we camped out together, he had just gone thru and emergency back surgery due to a ruptured disc, and I was 9 months pregnant with our youngest, Mello.
Back then, it was a full sized futon that we squeezed on to with a needy German Shepherd.
After Mello was born, we moved a pack and play with a bassinet insert right next to the futon, and the Living area became a bedroom. There, I could take care of the middle of the night feedings, and keep my husbands medicine schedule covered. Our house was less than 700 Square feet! (I actually miss that. I could vacuum the whole house from one outlet!!!)
That was 2 1/2 years ago. Unreal.
Since then, we have lived in 3 different places, survived homelessness, and realized that FAMILY is a bond that isn't always made with bloodlines. So, I'm no longer a believer in "Blood is thicker than Water"...Sorry!
People have asked about Stiff Person Syndrome almost every day since I was diagnosed. I research EVERY DAY, and I can't find ONE single "foundation" or "association" to direct them to. Just Google!
So, what I will tell you is what I deal with personally. If you don't want to know, don't read this. This is a very REAL account of parts of typical days, weeks and months for me, and tons of people with chronic illness.
I usually don't sugar coat much, but you will see some parts of this "lightened" a bit, in case a younger person reads this.
LIVING WITH STIFF PERSON SYNDROME
Like anything else, even though I was just diagnosed, I have had this disease for much longer than the month or so that I have carried the title.
When you have symptom after symptom, and already have a chronic illness, you think of any new "symptom" as just another side effect of what you already have, or medication induced problems, or even stress.
That's exactly what I've done.
I have had a Pain Specialist for my diagnosis of Occipital Neuralgia for over a year now. About 6 months ago, I explained to my doctor that I have had problems with muscle spasms for years, but that they were gradually getting worse. Even the doctor thought my back spasms were related to everything else as well.
So, as I grew more uncomfortable, the spasm in my back actually started to bulge. It looked like someone had taken a paper towel roll and slid it under my skin, parallel to my spine on the right side. As it got worse, I wasn't able to stand up straight. I stayed hunched over like a 90 year old woman, and limped around.
It was awful. I ended up having to ASK for an MRI, because the pain had become unbearable, and I was having trouble getting around my own house. I couldn't pick up the kids, put dishes away in cabinets above my head...I was frustrated. I was convinced I had herniated a disc, or pinched a nerve.
I have become somewhat of an "expert" on herniated discs, because my husband had one for years. After 2 years of conservative treatment, ie; PT, epidural injections, steroids, he RUPTURED his disc.
How? Well, we were in an elevator, it went down, and right before the doors opened, it dropped about 3 inches. My husband went into shock the pain was so bad, and he was in Emergency Surgery 2 days later for a Micro-Discectomy.
The MRI (L and T spine) came back with just evidence of severe spasms, and 2 herniated discs. (This was ODD to me, because I had no "trauma" in order to herniate discs.
My C-Spine MRI (my neck) was the most telling. The doctor said he had "never seen a neck so straight". Apparently thats a BAD thing. The spasms went from my neck to my hips, and hurt like hell!
So, I was put on a regular regimen of muscle relaxers, and went in for a few epidural procedures to relieve some of the rigidity. That helped a little. I was at least able to stand up straighter!
(need to finish this later....meds are kicking in...)
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