Yesterday I felt better.
I woke up and sat on the porch and enjoyed what seemed like an Oasis at my Parent's house. My father took my to a medical massage appointment. She was able to recreate the awful pain in my head and neck by pinching the the large muscle in the front of my neck. I was crying through most of the hour session. She thinks that the front neck muscles are cramping and causing the all the pain and trauma to the head and neck and the doctors and injecting and treating the wrong muscles.
We then went to my apartment to pick up some paperwork and there was this strange smell when we walked in that I could not pin point. It was everywhere. We think it is coming from the basement. I cannot access the basement so I emailed my landlord and asked her if she could check it out.
My medications yesterday:
Toradol, Doxycycline, Topamax, Neurontin, Ativan, Imitrex
Hmm,, I don't think I even took a percocet yesterday because I wanted to see how much the massage would help me.
I felt better yesterday. But when I woke up this morning I wanted to cry again. I did some stretches that the massage therapist showed me before I crawled out of bed then slowly walked out to the back porch. Now just trying to relax a bit before I go back inside and start filling my body with drugs again. Been awake for an hour now. Woke up at 6am. No one else will be awake until at least 8am. I kinda wish they were awake now. The pain is really bad today.
Thursday, August 21, 2014
Tuesday, August 19, 2014
Another day another battle
I couldn't sleep last night. I gave up in tears at 3am and was able to get hold of my sister at while she was at work and she talked to me for an hour to calm me down. I tried to lay back down and sleep and finally got a few hours between 7 and 10. I woke up crying in pain again. I called my dad knowing I couldn't do this alone anymore. I couldn't get much out over the phone except for sobs. He understood, though, and said he would come over. He sat with me all day and listened to me cry and whine and go on about the pain and treatments. He got me to eat some cheese. He helped me clean a little. Then came the hard part for me. I asked if I could stay with him for a little while because I obviously can't do this alone. I packed a bag and made arrangements for the cats.
This is so hard for me.
Today's medications: Topamax, Doxycyline, Toradol, Percocet, Ativan, Imitrex, Neurontin
It's hard for me to keep up with what I have to take and when. I feel like there are 20 medicines on the counter with my name on them that I have to keep up with. Some are twice a day, some 4 times a day, some in the morning, some as needed, some at night, but what have I already taken??? Some are the dreaded once a week that I need so badly that I can't use until Thursday.
The pain is going down my shoulder and arm again and into my hand. I'm getting fire balls in my palm. I couldn't use scissors today and fear I am going to drop the glass I am drinking from. I am getting random spasms throughout my upper body.
I managed to make an appointment for a medical massage tomorrow at noon in hopes of it easing some of the pain.
My parents fed me a kick ass dinner and I actually ate.
Currently laying on a heating pad in my bed at my parent's house hoping I will be able to sleep tonight.
This is so hard for me.
Today's medications: Topamax, Doxycyline, Toradol, Percocet, Ativan, Imitrex, Neurontin
It's hard for me to keep up with what I have to take and when. I feel like there are 20 medicines on the counter with my name on them that I have to keep up with. Some are twice a day, some 4 times a day, some in the morning, some as needed, some at night, but what have I already taken??? Some are the dreaded once a week that I need so badly that I can't use until Thursday.
The pain is going down my shoulder and arm again and into my hand. I'm getting fire balls in my palm. I couldn't use scissors today and fear I am going to drop the glass I am drinking from. I am getting random spasms throughout my upper body.
I managed to make an appointment for a medical massage tomorrow at noon in hopes of it easing some of the pain.
My parents fed me a kick ass dinner and I actually ate.
Currently laying on a heating pad in my bed at my parent's house hoping I will be able to sleep tonight.
Monday, August 18, 2014
What's Been Going On
I haven't been feeling well lately, so not posting and talking to many people. A friend suggested that maybe I post about what is going on, what I am going through, to get it out, to tell people, to share.
I think it started in May 2013 when I got bit by a tick and got Rocky Mountain Spotted Fever, and it has caused nothing but problems ever since. I can't prove this, medical science can't prove this, but I have had nothing but problems ever since I got bit. I didn't get diagnosed and "treated" for RMSF until September 2013, and that caused most of the issues. Having the disease in my system for that long really messed me up. It caused severe neurological issues and fucked up my immune system.
I have had migraines since I was 18 - for 22 years. RMSF caused my migraines to go into overdrive, and added an awful twist - neck pain that doctors can't really diagnose and can't get rid of. The neck pain and migraines have caused my right arm to go numb and into painful spasms periodically for weeks at a time. The pain and spasms also would go down my right side and at one point made my legs go numb.
I have seen many doctors, had many treatments, tried many medications, massage, acupuncture, physical therapy, and I have missed countless days of work. I have had to go on Short Term Disability three times since May 2013. I am currently on Medical Leave again, since July 21st.
I am currently working with two neurologists and my primary care doctor to ease my pain and symptoms. Along with the migraines and neck pain, I catch ever bug and cold that comes my way. My two neurologists actually managed to calm down my migraines and neck pain for a while earlier this year by giving me a Myobloc injection in my neck on March 20th and then Botox injections in my head, face, and neck on April 2nd. I had 1 or two migraines between the beginning of March and the beginning of June - about 3 months. But, my right arm went numb and was useless again within days of getting the Botox injections, and I missed 3 weeks of work. These injections were in addition to the twice daily medication I take to prevent migraines, the acute migraine medicine I take, the pain meds, and the muscle relaxers I take up to four times a day.
In June the migraines came back - I had 7 days of migraines, 7 days of missed work, and this was after the insane kidney infection that landed me in the hospital that kept me out of work for 5 days. I had a migraine July 1st, 2nd, and 3rd. I had more Botox injections July 2nd that sent my pain level soaring to a 10. My migraine neurologist sent me to the pain neuorologist for something called a Sphenocath that day, where they put a catheter up my nose and spray lidocaine deep into my sinus cavity and numb it. It made the migraine go from a pain level 10 to a 2. I couldn't believe it. I was pain free until the 7th, and that pain stuck around for two days, missing two more days of work. A shot of demerol from my pain neurologist eased that one away.
I was then migraine free again for a short time. I woke up on the morning of July 21st with severe neck pain and a migraine. I took the pain meds, the acute migraine meds, the muscle relaxers, and stayed in bed. I woke up the 22nd, still in pain, and called the pain neurologist to see if they could fit me in for the Sphenocath since it worked so well the first time I got it. I felt better for a few hours, then the pain came crushing back. And this is how it has gone every day since. I wake up in severe pain, either go to the doctor or get something called in, sometimes get relief for a few hours, sometimes get no relief, but the pain comes crushing back. I wake up in tears because the pain is still there. I cry in the afternoon because the pain comes back. I cry in the doctor's office because they can't figure it out. I cry on the phone dealing with HR. I cry on the phone dealing with insurance and the medical leave people for being incompetent asshats. Pain causes stress and stress causes pain and desperation. I was in the migraine neurologist's office today in tears the entire time because they just can't figure this out and I was begging to cut out half of my neck just to get rid of the source of the pain. We know that my neck is the source, we just don't know why. I know it was that damned tick bite, but since I went 6 months undiagnosed there isn't much they can do.
They have tried Flexeril, Perocet, Neurontin, Ativan, Naproxen, Imitrex, and countless other prescriptions for the neck pain and migraines since May 2013. I have had Epidurals, Facets Injections, RFs (my nerves burned), Nerve Blocks, Trigger Point Injections, Demerol, Dilaudid, and Nubaine injections for my neck and arm. I have been medically diagnosed with RMSF, chronic migraines, Dystonia, Bones Spurs, Pinched Nerves, Muscle Spasms, and Arthritis. None of these diagnosis are severe enough for surgery in my doctors eyes. In my eyes I think they should cut open my neck, scrape away the spurs, and cut the muscles so they don't spasm. I don't even know if that last one is possible, but they cut open my elbow in 2010 to make my hand not spasm, so why not my neck?
So daily since July 21st, this is what I have gone through. Every day I take 2 Topamax. I typically take 1-4 Ativan a day for muscle spasm, but try to keep it to a minimum. I typically cut the Perocets in half unless the pain is really, really really bad. I have also used heat and ice on my neck and head.
July 21st: Ativan, Percocet, Imitrix
July 22nd: Sphenocath (Dr Visit), Ativan
July 23rd: Ativan , Percocet
July 24th: Ativan , Percocet, Imitrex, Naproxen
July 25th: Ativan , Percocet, Steroids (Dr RX Call-in)
July 26th: Ativan , Percocet, Steroids
July 27th: Ativan , Percocet, Steroids
July 28th: Ativan , Percocet, Steroids
July 29th: Ativan , Percocet, Steroids, Demerol injection (Dr Visit), Trigger Point injections neck (Dr Visit)
July 30th: Ativan , Percocet, Torodal injection (Dr Visit)
July 31st: Ativan , Percocet, Imitrex, Naproxen
August 1st: Ativan , Percocet, Doxycycline (for 3 weeks) (Dr Visit, blood work for RMSF flare)
August 2nd: Ativan , Percocet, Doxycycline
August 3rd: Ativan , Percocet, Doxycycline
August 4th: Ativan , Percocet, Doxycycline
August 5th: Ativan , Percocet, Doxycycline
August 6th: Ativan , Percocet, Doxycycline, Sphenocath lidocaine and steroids (Dr Visit)
August 7th: Ativan , Percocet, Doxycycline, Imitrex, Naproxen
August 8th: Ativan , Percocet, Doxycycline, Trigger Point Injections neck (Dr Visit), Bupap Rx (Dr Call-in)
August 9th: Ativan , Percocet, Doxycycline
August 10th: Ativan , Percocet, Doxycycline, Imitrex, Naproxen, Phenegren
August 11th: Ativan , Percocet, Doxycycline
August 12th: Ativan , Percocet, Doxycycline, Myobloc injection (Dr Visit), Dilaudid rx, Phenegren
August 13th: Ativan , Percocet, Doxycycline
August 14th: Doxycycline, Stadol (nasal pain opiate spray)
August 15th: Ativan , Percocet, Doxycycline
August 16th: Doxycycline - I forced myself not to take anything for pain for a day
August 17th: Ativan , Percocet, Doxycycline - the pain was too bad after that day of nothing
August 18th: Ativan, Doxycycline, Dilaudid, Nerve Blocks neck and eye brow (Dr Visit), Toradol injection (Dr Visit), Toradol Rx (for 5 days), Imitrex (twice a day until 8/25), Neurontin (at night instead of Ativan)
I think the above list is nuts. Just nuts. I shouldn't have to go through this. The migraine neurologist really thinks it is Dystonia causing all this, and has ordered Physical Therapy again. The lady I went to last year when he ordered it moved to Ohio, so I got another Therapist at the same location, but I can't get in until next week. I already have 4 doctor appointments next week. I am worried about the PT. Last year I ended up in the hospital because of it. But then again, we didn't know I had RMSF when I was going last year and the PT was aggravating it.
Many of these treatments and medicines can only be done or taken once a week or so, due to how addictive they are, which really sucks because the one thing that worked the most with the least side effects was the Stadol, and that is the most addictive drug they have given me.
So this is what I am going through, medically. This is why I am distant. This is why I am not posting. This is why you haven't seen me in a while. This is why I am crying a lot lately. You would be crying, too, if you were if half as much pain as I have been in lately. Hell, not even half.
This is why I need hugs.
I think it started in May 2013 when I got bit by a tick and got Rocky Mountain Spotted Fever, and it has caused nothing but problems ever since. I can't prove this, medical science can't prove this, but I have had nothing but problems ever since I got bit. I didn't get diagnosed and "treated" for RMSF until September 2013, and that caused most of the issues. Having the disease in my system for that long really messed me up. It caused severe neurological issues and fucked up my immune system.
I have had migraines since I was 18 - for 22 years. RMSF caused my migraines to go into overdrive, and added an awful twist - neck pain that doctors can't really diagnose and can't get rid of. The neck pain and migraines have caused my right arm to go numb and into painful spasms periodically for weeks at a time. The pain and spasms also would go down my right side and at one point made my legs go numb.
I have seen many doctors, had many treatments, tried many medications, massage, acupuncture, physical therapy, and I have missed countless days of work. I have had to go on Short Term Disability three times since May 2013. I am currently on Medical Leave again, since July 21st.
I am currently working with two neurologists and my primary care doctor to ease my pain and symptoms. Along with the migraines and neck pain, I catch ever bug and cold that comes my way. My two neurologists actually managed to calm down my migraines and neck pain for a while earlier this year by giving me a Myobloc injection in my neck on March 20th and then Botox injections in my head, face, and neck on April 2nd. I had 1 or two migraines between the beginning of March and the beginning of June - about 3 months. But, my right arm went numb and was useless again within days of getting the Botox injections, and I missed 3 weeks of work. These injections were in addition to the twice daily medication I take to prevent migraines, the acute migraine medicine I take, the pain meds, and the muscle relaxers I take up to four times a day.
In June the migraines came back - I had 7 days of migraines, 7 days of missed work, and this was after the insane kidney infection that landed me in the hospital that kept me out of work for 5 days. I had a migraine July 1st, 2nd, and 3rd. I had more Botox injections July 2nd that sent my pain level soaring to a 10. My migraine neurologist sent me to the pain neuorologist for something called a Sphenocath that day, where they put a catheter up my nose and spray lidocaine deep into my sinus cavity and numb it. It made the migraine go from a pain level 10 to a 2. I couldn't believe it. I was pain free until the 7th, and that pain stuck around for two days, missing two more days of work. A shot of demerol from my pain neurologist eased that one away.
I was then migraine free again for a short time. I woke up on the morning of July 21st with severe neck pain and a migraine. I took the pain meds, the acute migraine meds, the muscle relaxers, and stayed in bed. I woke up the 22nd, still in pain, and called the pain neurologist to see if they could fit me in for the Sphenocath since it worked so well the first time I got it. I felt better for a few hours, then the pain came crushing back. And this is how it has gone every day since. I wake up in severe pain, either go to the doctor or get something called in, sometimes get relief for a few hours, sometimes get no relief, but the pain comes crushing back. I wake up in tears because the pain is still there. I cry in the afternoon because the pain comes back. I cry in the doctor's office because they can't figure it out. I cry on the phone dealing with HR. I cry on the phone dealing with insurance and the medical leave people for being incompetent asshats. Pain causes stress and stress causes pain and desperation. I was in the migraine neurologist's office today in tears the entire time because they just can't figure this out and I was begging to cut out half of my neck just to get rid of the source of the pain. We know that my neck is the source, we just don't know why. I know it was that damned tick bite, but since I went 6 months undiagnosed there isn't much they can do.
They have tried Flexeril, Perocet, Neurontin, Ativan, Naproxen, Imitrex, and countless other prescriptions for the neck pain and migraines since May 2013. I have had Epidurals, Facets Injections, RFs (my nerves burned), Nerve Blocks, Trigger Point Injections, Demerol, Dilaudid, and Nubaine injections for my neck and arm. I have been medically diagnosed with RMSF, chronic migraines, Dystonia, Bones Spurs, Pinched Nerves, Muscle Spasms, and Arthritis. None of these diagnosis are severe enough for surgery in my doctors eyes. In my eyes I think they should cut open my neck, scrape away the spurs, and cut the muscles so they don't spasm. I don't even know if that last one is possible, but they cut open my elbow in 2010 to make my hand not spasm, so why not my neck?
So daily since July 21st, this is what I have gone through. Every day I take 2 Topamax. I typically take 1-4 Ativan a day for muscle spasm, but try to keep it to a minimum. I typically cut the Perocets in half unless the pain is really, really really bad. I have also used heat and ice on my neck and head.
July 21st: Ativan, Percocet, Imitrix
July 22nd: Sphenocath (Dr Visit), Ativan
July 23rd: Ativan , Percocet
July 24th: Ativan , Percocet, Imitrex, Naproxen
July 25th: Ativan , Percocet, Steroids (Dr RX Call-in)
July 26th: Ativan , Percocet, Steroids
July 27th: Ativan , Percocet, Steroids
July 28th: Ativan , Percocet, Steroids
July 29th: Ativan , Percocet, Steroids, Demerol injection (Dr Visit), Trigger Point injections neck (Dr Visit)
July 30th: Ativan , Percocet, Torodal injection (Dr Visit)
July 31st: Ativan , Percocet, Imitrex, Naproxen
August 1st: Ativan , Percocet, Doxycycline (for 3 weeks) (Dr Visit, blood work for RMSF flare)
August 2nd: Ativan , Percocet, Doxycycline
August 3rd: Ativan , Percocet, Doxycycline
August 4th: Ativan , Percocet, Doxycycline
August 5th: Ativan , Percocet, Doxycycline
August 6th: Ativan , Percocet, Doxycycline, Sphenocath lidocaine and steroids (Dr Visit)
August 7th: Ativan , Percocet, Doxycycline, Imitrex, Naproxen
August 8th: Ativan , Percocet, Doxycycline, Trigger Point Injections neck (Dr Visit), Bupap Rx (Dr Call-in)
August 9th: Ativan , Percocet, Doxycycline
August 10th: Ativan , Percocet, Doxycycline, Imitrex, Naproxen, Phenegren
August 11th: Ativan , Percocet, Doxycycline
August 12th: Ativan , Percocet, Doxycycline, Myobloc injection (Dr Visit), Dilaudid rx, Phenegren
August 13th: Ativan , Percocet, Doxycycline
August 14th: Doxycycline, Stadol (nasal pain opiate spray)
August 15th: Ativan , Percocet, Doxycycline
August 16th: Doxycycline - I forced myself not to take anything for pain for a day
August 17th: Ativan , Percocet, Doxycycline - the pain was too bad after that day of nothing
August 18th: Ativan, Doxycycline, Dilaudid, Nerve Blocks neck and eye brow (Dr Visit), Toradol injection (Dr Visit), Toradol Rx (for 5 days), Imitrex (twice a day until 8/25), Neurontin (at night instead of Ativan)
I think the above list is nuts. Just nuts. I shouldn't have to go through this. The migraine neurologist really thinks it is Dystonia causing all this, and has ordered Physical Therapy again. The lady I went to last year when he ordered it moved to Ohio, so I got another Therapist at the same location, but I can't get in until next week. I already have 4 doctor appointments next week. I am worried about the PT. Last year I ended up in the hospital because of it. But then again, we didn't know I had RMSF when I was going last year and the PT was aggravating it.
Many of these treatments and medicines can only be done or taken once a week or so, due to how addictive they are, which really sucks because the one thing that worked the most with the least side effects was the Stadol, and that is the most addictive drug they have given me.
So this is what I am going through, medically. This is why I am distant. This is why I am not posting. This is why you haven't seen me in a while. This is why I am crying a lot lately. You would be crying, too, if you were if half as much pain as I have been in lately. Hell, not even half.
This is why I need hugs.
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