Luna woke me up in the middle of the night and I had to pee...
Suprise! Red pee for me. I just dunno what is up.
Body pain, hot flashes today. Just generally feel yucky.
Wednesday, August 31, 2016
Tuesday, August 30, 2016
Pain is increasing, mind is overwhelmed
Lots of body pain the past few days.
Also a lot of mental confusion, speech issues, forgetfulness, and frankly I do not trust myself to do any important task right now. Bladder pain is much much less.
Body pain has increasingly gotten worse, but is it my weaning off of Lyrica to Gabbapentin? Coincidence? Doctors all agree Lyrica is a better neurologicalmpain releiver than Gabbapentin. It is unfortunate that my insurance will not cover it and I am almost out of samples. I am however trying to see if I can get meds through the manufacturer.
Stomach aches are still pretty bad. I just don't feel with it... 🙁
Also a lot of mental confusion, speech issues, forgetfulness, and frankly I do not trust myself to do any important task right now. Bladder pain is much much less.
Body pain has increasingly gotten worse, but is it my weaning off of Lyrica to Gabbapentin? Coincidence? Doctors all agree Lyrica is a better neurologicalmpain releiver than Gabbapentin. It is unfortunate that my insurance will not cover it and I am almost out of samples. I am however trying to see if I can get meds through the manufacturer.
Stomach aches are still pretty bad. I just don't feel with it... 🙁
Friday, August 26, 2016
Stomach Ickies
Really bad stomach pain today..
Bad ache and nausea. I realized I have Zofran an anti nausea medication so I took it, some pepto and made some ginger tea. After all of that and some M M it finally eased up after a few hours.
I have started integrating Gabbapentin into my medication to replace Lyrica, my samples are almost gone, insurance does not cover it. Supposed to step up with Gabbapentin.. Gab supposedly is like Lyrica but does not work as well. I know Lyrica has helped a lot with neurological pain, hopefully Gab will continue to help.
Bad ache and nausea. I realized I have Zofran an anti nausea medication so I took it, some pepto and made some ginger tea. After all of that and some M M it finally eased up after a few hours.
I have started integrating Gabbapentin into my medication to replace Lyrica, my samples are almost gone, insurance does not cover it. Supposed to step up with Gabbapentin.. Gab supposedly is like Lyrica but does not work as well. I know Lyrica has helped a lot with neurological pain, hopefully Gab will continue to help.
Wednesday, August 24, 2016
Emotion Sickness
What many people on the outside do not realize about Multiple Sclerosis, is that not only does it affect your limbs and physical function, it directly affects your mind and emotions as well. (As if we didn't have enough to deal with!)
It's common to get obsessive to the point of panic about the little things, to get angry or snappy at the ones we love (generally out of frustration) and not directed at anyone in particular but it comes out at the nearest victim.
It's common to have a huge array of emotions even within one hour. This takes a huge toll on the body as a whole, imagine the energy it takes to feel the spectrum of emotions so quickly and whole heartedly. Imagine being terrified and confused as to what is happening to you, as well as terrifying and confusing the people around you!
It's common to break down crying for absolutely no reason or to become overwhelmed by people,sounds,lights, fast movements.
It's common that Any stressful news literally feels like the very end of the world. Like THE end of the world. As in ok I am Fed up with life I guess I will pack a bag and move to Antarctica. Sometimes these insanely intense feelings stem from something so logically insignificant as something not getting done around the house.....
Keep in mind that stress is killer... You stress about something be prepared to not be able to walk or see, for me things get tingly and numb as well as very painful. Makes you think... What kind of twisted disease is this?
I am writing this because I am pretty down today.
Down has it's own array of emotions, and they are intensified. Hopelessness takes on a new meaning and you realize just how cruel your own mind can be.
MS sucks. It invades your body, it invades your mind.
It's common to get obsessive to the point of panic about the little things, to get angry or snappy at the ones we love (generally out of frustration) and not directed at anyone in particular but it comes out at the nearest victim.
It's common to have a huge array of emotions even within one hour. This takes a huge toll on the body as a whole, imagine the energy it takes to feel the spectrum of emotions so quickly and whole heartedly. Imagine being terrified and confused as to what is happening to you, as well as terrifying and confusing the people around you!
It's common to break down crying for absolutely no reason or to become overwhelmed by people,sounds,lights, fast movements.
It's common that Any stressful news literally feels like the very end of the world. Like THE end of the world. As in ok I am Fed up with life I guess I will pack a bag and move to Antarctica. Sometimes these insanely intense feelings stem from something so logically insignificant as something not getting done around the house.....
Keep in mind that stress is killer... You stress about something be prepared to not be able to walk or see, for me things get tingly and numb as well as very painful. Makes you think... What kind of twisted disease is this?
I am writing this because I am pretty down today.
Down has it's own array of emotions, and they are intensified. Hopelessness takes on a new meaning and you realize just how cruel your own mind can be.
MS sucks. It invades your body, it invades your mind.
Monday, August 22, 2016
Sunday-Mon
Sunday was a much better day.
I had gotten lots of sleep and was finally clear-headed. But I still had the question... why was I STILL having bladder and uti pain if I have no infection??? The pain had lessened some, but it was still very much lingering and aching. I just do not know.... maybe the antibiotics are still working their way through my body? Usually with an infection like this the pain goes away 90 percent the first day you take the antibiotics. Not so in this case at all.
I will have to talk to Primary Doc about it I suppose.
During this whole fiasco I was pretty weak and not walking well... just as a note to self. Still today, Monday.. I am not moving around too well. Pain, Dizziness, Weakness (And yes, still have bladder pain with occasional nausea)
I had gotten lots of sleep and was finally clear-headed. But I still had the question... why was I STILL having bladder and uti pain if I have no infection??? The pain had lessened some, but it was still very much lingering and aching. I just do not know.... maybe the antibiotics are still working their way through my body? Usually with an infection like this the pain goes away 90 percent the first day you take the antibiotics. Not so in this case at all.
I will have to talk to Primary Doc about it I suppose.
During this whole fiasco I was pretty weak and not walking well... just as a note to self. Still today, Monday.. I am not moving around too well. Pain, Dizziness, Weakness (And yes, still have bladder pain with occasional nausea)
Sleep, Pain and DPU
Saturday Aug. 20th
James and I both fell asleep as soon as we got home from the Hospital around 8 am....
1:00 pm -
Holy hell! Severe knee pain in both legs.. Throbbing shooting aching, awful. I woke up kicking in my sleep. I was thinking to myself... Why my knees? I put my feet on the floor and realized I cannot put pressure on my legs at all, and then I figured it out.
Who just spent 7 hours sitting in one position in a wheelchair? Who has DPU (Delayed Pressure Urticaria) and put pressure on her knees for 7 + hours? Ugh.... I just can't catch a break.
Yep.. SUPER Swollen Hivey knees with really REALY bad pain. DPU and Multiple Sclerosis, When their powers combine!? No.. I do not become Captain Planet. (ha ha my attempt at being funny)
It creates agonizing pain. I did not think about how I Was sitting at the time, and how much pressure I was putting on what and where, I was focusing on trying to get into the damned E.R.
That's it, I'm never leaving my house again.
So...
My Saturday was shot, still a lot of bladder pain making it painful to move, and any pressure on my knees was really awful... put heat on everything, and took a myriad of pain medication and went to sleep for the rest of Saturday, and Saturday night.
James and I both fell asleep as soon as we got home from the Hospital around 8 am....
1:00 pm -
Holy hell! Severe knee pain in both legs.. Throbbing shooting aching, awful. I woke up kicking in my sleep. I was thinking to myself... Why my knees? I put my feet on the floor and realized I cannot put pressure on my legs at all, and then I figured it out.
Who just spent 7 hours sitting in one position in a wheelchair? Who has DPU (Delayed Pressure Urticaria) and put pressure on her knees for 7 + hours? Ugh.... I just can't catch a break.
Yep.. SUPER Swollen Hivey knees with really REALY bad pain. DPU and Multiple Sclerosis, When their powers combine!? No.. I do not become Captain Planet. (ha ha my attempt at being funny)
It creates agonizing pain. I did not think about how I Was sitting at the time, and how much pressure I was putting on what and where, I was focusing on trying to get into the damned E.R.
That's it, I'm never leaving my house again.
So...
My Saturday was shot, still a lot of bladder pain making it painful to move, and any pressure on my knees was really awful... put heat on everything, and took a myriad of pain medication and went to sleep for the rest of Saturday, and Saturday night.
Friday Aug 19th.. Trip to the E.R
Friday August 19th
Trip to the E.R
Friday evening my bladder pain which was supposed to be getting better actually got a lot worse. It was a minor annoyance, to "I have to lay in bed with heat on it" to "The pain is making me sick to my stomach and pretty severe" My primary care Doc said to go to the E.R by Saturday if I had no improvement or more pain, as it could very likely be that I have an antibiotic resistant infection that could turn into Sepsis very quick since my immune system is so low and many of the medications mask the symptoms of infection, such as fever. The severe pain was worrisome because I had two seperate shots of strong antibiotics, and also was taking a new stronger antibiotic macro something or another.
Didn't want to go to the hospital but a bodily infection is not something I wanted either.
Went to the Renown E.R around 8 pm Friday evening. It was crazy busy.
All the noises and people were a huge overstimulation to of all my senses. Thankfully I Came prepared with heavy duty earplugs... still, it was all I could do to keep my shit together.
Unfortunately we had to wait in the waiting room for 7 1/2 hours before I could get in to be seen around 3:30 am. The pain was getting really really bad, and making me nauseated... so I did go out to the car to lay flat for a while, while James waited inside in case they called my name. That seemed to help a lot.
Seemed we picked a helluva evening to go to the E.R.... I witnessed at least 20 people walk out and go to St. Mary's hospital due to serious cases being untreated for many hours. I guess there is only so much they can do when rooms are full.
After finally getting in, they took massive amounts of blood, and did a few pee tests. Also gave me some pain meds. Pee tests came back infection free! Which was odd, but I was thankful for it. It seems that the new antibiotic prescribed by my primary Doc was actually doing it's job, and bladder/uti infection was gone. ER doc ordered a Cat Scan of abdomen because of all the pain in the bladder, but it came back clear of any issues. Glad for that! But the pain was still really severe... ER doc didn't know what to tell me other than I was free to go home and keep taking the antibiotics prescribed, and Zofran for nausea.
Doc and Nurses said all signs pointed to something more serious, so it was not a wasted trip... it was a good call that I went. James and I were totally beat... we got home around 8 in the morning and crashed.
Trip to the E.R
Friday evening my bladder pain which was supposed to be getting better actually got a lot worse. It was a minor annoyance, to "I have to lay in bed with heat on it" to "The pain is making me sick to my stomach and pretty severe" My primary care Doc said to go to the E.R by Saturday if I had no improvement or more pain, as it could very likely be that I have an antibiotic resistant infection that could turn into Sepsis very quick since my immune system is so low and many of the medications mask the symptoms of infection, such as fever. The severe pain was worrisome because I had two seperate shots of strong antibiotics, and also was taking a new stronger antibiotic macro something or another.
Didn't want to go to the hospital but a bodily infection is not something I wanted either.
Went to the Renown E.R around 8 pm Friday evening. It was crazy busy.
All the noises and people were a huge overstimulation to of all my senses. Thankfully I Came prepared with heavy duty earplugs... still, it was all I could do to keep my shit together.
Unfortunately we had to wait in the waiting room for 7 1/2 hours before I could get in to be seen around 3:30 am. The pain was getting really really bad, and making me nauseated... so I did go out to the car to lay flat for a while, while James waited inside in case they called my name. That seemed to help a lot.
Seemed we picked a helluva evening to go to the E.R.... I witnessed at least 20 people walk out and go to St. Mary's hospital due to serious cases being untreated for many hours. I guess there is only so much they can do when rooms are full.
After finally getting in, they took massive amounts of blood, and did a few pee tests. Also gave me some pain meds. Pee tests came back infection free! Which was odd, but I was thankful for it. It seems that the new antibiotic prescribed by my primary Doc was actually doing it's job, and bladder/uti infection was gone. ER doc ordered a Cat Scan of abdomen because of all the pain in the bladder, but it came back clear of any issues. Glad for that! But the pain was still really severe... ER doc didn't know what to tell me other than I was free to go home and keep taking the antibiotics prescribed, and Zofran for nausea.
Doc and Nurses said all signs pointed to something more serious, so it was not a wasted trip... it was a good call that I went. James and I were totally beat... we got home around 8 in the morning and crashed.
Friday, August 19, 2016
Doctor Appointment, Stubborn Infection, and Dispensary
Yesterday I saw my Primary Care Doctor Snow.
Had my checklist ready.... Thankfully I got my letter faxed off disclosing that I basically have a recently diagnosis for Multiple Sclerosis and cannot be employed due to complications. (More or less). I thanked him for the Valium.. Definitely helps me pee. We talked about my recurring UTI/Bladder infection. I would have thought Cipro taken twice for a UTI would have nixed it. Nope, I Have some super strain that is resistant to this particular infection, and my immune system is pretty much 0 right now.
Since I am on Prednisone (weaning myself off slowly) my immune system is really really at risk of infection. I can only wean myself off so slowly or I get hives, anaphylaxis etc. But I did tell him I would try stepping down a little faster. I have an epipen and a giant bottle of benedryl. So I peed in a cup, they took it off to test for infection, and there was definitely a uti happening. Cipro didn't kill it, it needed something else with a little more "oomph". My Doctor had to get creative because I am allergic to Sulpha based antibiotics, but did find a suitable antibiotic as well as giving two strong shots of antibiotics in the butt because things could turn into sepsis very fast if infection did not get controlled.
I was instructed that if I do not feel significantly better by Saturday to go to the E.R and get checked out for Sepsis. Really don't want to do that... but a bodily infection would be bad untreated. Today is Friday, I feel like I did yesterday.. :/
Two meds were takin off my med list, and two were added.
Taken off:
Famotidine (Pepcid and H2 blocker)
Cipro (Antibiotic)
Added:
Pantoprazole - (New Antacid, to protect my stomach from prednisone which can cause ulcers)
Nitrofurantoin Macro (New Antibiotic instead of Cipro)
Note to self:
Whilst we were brainstorming with the doctor as to what to do with me, he mentioned that there IS an alternative to prednisone. Starts with an M meta something maybe? All the doctors I have talked to have told me Prednisone is THE drug for inflammation etc. Even the hospital said prednisone/solumedrol is it. Apparently there IS another drug, it's a bit stronger than prednisone, but is used for people with adverse reactions to prednisone. (That would be me.) However, since it is stronger he didn't want to bombard my already fragile immune system and the mountain of pills that I take already. But for future reference I am putting this here.
My mom took me to one of the local dispensaries after my Doctor appointment.
This one was very nice, recommended by Dr.Jackson. They even gave me a great discount for her referral!
The daytime strain that was highly recommended for muscle tremors and pain they were out of unfortunately, so the next best in the same category was Sequoia Strawberry. Stardust was recommended as a good evening strain, so I got both and some gummy edibles.
I had a long day and my body had sensory overload. I was feeling that strange body vibration again, and it wasn't a good feeling... The strain Stardust is nice! I tried it last night. Stardust is a definite mood lift. It smells skunky and piney, it is a little harsh but I was drinking very spicy ginger tea. Variables. I felt the calm in my muscles that pharmaceuticals just cannot fully relieve. The nervousness in my arms and legs faded away, and at least for a while I could feel some relaxed peace in my body. Moments like those are precious, for a few seconds I can almost imagine pretending to be "okay" again.
Had my checklist ready.... Thankfully I got my letter faxed off disclosing that I basically have a recently diagnosis for Multiple Sclerosis and cannot be employed due to complications. (More or less). I thanked him for the Valium.. Definitely helps me pee. We talked about my recurring UTI/Bladder infection. I would have thought Cipro taken twice for a UTI would have nixed it. Nope, I Have some super strain that is resistant to this particular infection, and my immune system is pretty much 0 right now.
Since I am on Prednisone (weaning myself off slowly) my immune system is really really at risk of infection. I can only wean myself off so slowly or I get hives, anaphylaxis etc. But I did tell him I would try stepping down a little faster. I have an epipen and a giant bottle of benedryl. So I peed in a cup, they took it off to test for infection, and there was definitely a uti happening. Cipro didn't kill it, it needed something else with a little more "oomph". My Doctor had to get creative because I am allergic to Sulpha based antibiotics, but did find a suitable antibiotic as well as giving two strong shots of antibiotics in the butt because things could turn into sepsis very fast if infection did not get controlled.
I was instructed that if I do not feel significantly better by Saturday to go to the E.R and get checked out for Sepsis. Really don't want to do that... but a bodily infection would be bad untreated. Today is Friday, I feel like I did yesterday.. :/
Two meds were takin off my med list, and two were added.
Taken off:
Famotidine (Pepcid and H2 blocker)
Cipro (Antibiotic)
Added:
Pantoprazole - (New Antacid, to protect my stomach from prednisone which can cause ulcers)
Nitrofurantoin Macro (New Antibiotic instead of Cipro)
Note to self:
Whilst we were brainstorming with the doctor as to what to do with me, he mentioned that there IS an alternative to prednisone. Starts with an M meta something maybe? All the doctors I have talked to have told me Prednisone is THE drug for inflammation etc. Even the hospital said prednisone/solumedrol is it. Apparently there IS another drug, it's a bit stronger than prednisone, but is used for people with adverse reactions to prednisone. (That would be me.) However, since it is stronger he didn't want to bombard my already fragile immune system and the mountain of pills that I take already. But for future reference I am putting this here.
My mom took me to one of the local dispensaries after my Doctor appointment.
This one was very nice, recommended by Dr.Jackson. They even gave me a great discount for her referral!
The daytime strain that was highly recommended for muscle tremors and pain they were out of unfortunately, so the next best in the same category was Sequoia Strawberry. Stardust was recommended as a good evening strain, so I got both and some gummy edibles.
I had a long day and my body had sensory overload. I was feeling that strange body vibration again, and it wasn't a good feeling... The strain Stardust is nice! I tried it last night. Stardust is a definite mood lift. It smells skunky and piney, it is a little harsh but I was drinking very spicy ginger tea. Variables. I felt the calm in my muscles that pharmaceuticals just cannot fully relieve. The nervousness in my arms and legs faded away, and at least for a while I could feel some relaxed peace in my body. Moments like those are precious, for a few seconds I can almost imagine pretending to be "okay" again.
Still Uti/Bladder Pain - And Something New
Well...
It's been a few days since I posted, but that is because I have written down snippets of information in my blog but not published them as they were just random happenings that would be incoherent to even me if I did not organize it!
Past few days I have had a lot of bladder/uti pain... and some new weird unpleasant things happening to me. One is best described as both "Restless BODY Syndrome" and general all-over body humming/vibration/tremors. Since I've been pushing myself more my body is undergoing more stress, and maybe this is the reason? It started out with just hand tremors after doing a task, but a few evenings ago hand tremors turned to my entire arm shaking, and then my entire back and legs etc until I had a general vibration throughout my body.
I say Restless BODY Syndrome, because if you have ever experienced Restless Leg Syndrome you know the feeling of having nervous, pent up energy in your legs. I personally get these alarming little spurts of adrenaline as well, that kick starts my fight or flight response over and over again (very much ties into my anxiety). Well it's like that, but your entire body. I think this really freaked me out the most because it did trigger some serious anxiety. With anxiety comes crying and stress, and well.. that just makes symptoms worse.
This feeling is new, and trying to find a good way to deal with it!
It's been a few days since I posted, but that is because I have written down snippets of information in my blog but not published them as they were just random happenings that would be incoherent to even me if I did not organize it!
Past few days I have had a lot of bladder/uti pain... and some new weird unpleasant things happening to me. One is best described as both "Restless BODY Syndrome" and general all-over body humming/vibration/tremors. Since I've been pushing myself more my body is undergoing more stress, and maybe this is the reason? It started out with just hand tremors after doing a task, but a few evenings ago hand tremors turned to my entire arm shaking, and then my entire back and legs etc until I had a general vibration throughout my body.
I say Restless BODY Syndrome, because if you have ever experienced Restless Leg Syndrome you know the feeling of having nervous, pent up energy in your legs. I personally get these alarming little spurts of adrenaline as well, that kick starts my fight or flight response over and over again (very much ties into my anxiety). Well it's like that, but your entire body. I think this really freaked me out the most because it did trigger some serious anxiety. With anxiety comes crying and stress, and well.. that just makes symptoms worse.
This feeling is new, and trying to find a good way to deal with it!
Tuesday, August 16, 2016
Exchange of Energy
Yesterday was a day...
I think the antibiotics are starting to finally work! Not feeling so much bladder pain, and overall yuckiness.
Trying to push my limits, but not too far. It's still very disappointing when I cannot accomplish even the smallest things I want to do, but I'm learning to deal with that a little better.
I am learning the price and exchange of energy. Walking to my Zen room to feed my snails and maybe test the water for a half hour is energy spent, and I have to go back to bed and rest for a few hours with heat on whatever hurts because I am so tired. Spending energy affects everything from head to toe. But mostly when I do small things my symptoms always end up like this:
Decreased Eyesight
Dizziness
Stuttering
Tremors (mostly in hands)
All-over weakness to non use of limbs (Can't walk)
Delayed reactions
Pain... arms/legs the most
Hearing sensitivity
Messes with my mental state as well, memory... emotions... always forgetting what I am doing.
After I get all of the above under control I can attempt to do more small tasks, with the knowledge that I will again have these issues and have to rest again. It's always changing though.. sometimes small tasks leave me in bed for days. And other times I'm only in bed for an hour. I'll take what I can get!
I am officially a vampire! No outside in the daytime for me....
HEAT is a killer. I have a swamp cooler in my house, it blows ice cold air in my kitchen and I have a box fan that pulls it down the hall into the Zen room and my Bedroom. Lately, it has not been getting cool enough in my bedroom and my swamp cooler is making a humming noise.... I went outside to check on the thingy and it was covered in these mineral deposits. It was SO hot out even the excursion from the inside of the house to the outside of the swamp cooler zapped my energy so fast. It kind of scared me as to what the heat could do so quickly.
I went from being somewhat balanced but walking slowly to totally drained and unable to stand. Tremors in my hands were really bad, and my eyesight decreased a bunch. Legs would not work. After a few hours of laying down for a while it got better, but it kind of freaked me out. We definitely need to get our swamp cooler fixed before it blows up or something.. then we would have no cool air at all.
I think the antibiotics are starting to finally work! Not feeling so much bladder pain, and overall yuckiness.
Trying to push my limits, but not too far. It's still very disappointing when I cannot accomplish even the smallest things I want to do, but I'm learning to deal with that a little better.
I am learning the price and exchange of energy. Walking to my Zen room to feed my snails and maybe test the water for a half hour is energy spent, and I have to go back to bed and rest for a few hours with heat on whatever hurts because I am so tired. Spending energy affects everything from head to toe. But mostly when I do small things my symptoms always end up like this:
Decreased Eyesight
Dizziness
Stuttering
Tremors (mostly in hands)
All-over weakness to non use of limbs (Can't walk)
Delayed reactions
Pain... arms/legs the most
Hearing sensitivity
Messes with my mental state as well, memory... emotions... always forgetting what I am doing.
After I get all of the above under control I can attempt to do more small tasks, with the knowledge that I will again have these issues and have to rest again. It's always changing though.. sometimes small tasks leave me in bed for days. And other times I'm only in bed for an hour. I'll take what I can get!
I am officially a vampire! No outside in the daytime for me....
HEAT is a killer. I have a swamp cooler in my house, it blows ice cold air in my kitchen and I have a box fan that pulls it down the hall into the Zen room and my Bedroom. Lately, it has not been getting cool enough in my bedroom and my swamp cooler is making a humming noise.... I went outside to check on the thingy and it was covered in these mineral deposits. It was SO hot out even the excursion from the inside of the house to the outside of the swamp cooler zapped my energy so fast. It kind of scared me as to what the heat could do so quickly.
I went from being somewhat balanced but walking slowly to totally drained and unable to stand. Tremors in my hands were really bad, and my eyesight decreased a bunch. Legs would not work. After a few hours of laying down for a while it got better, but it kind of freaked me out. We definitely need to get our swamp cooler fixed before it blows up or something.. then we would have no cool air at all.
Monday, August 15, 2016
Med Pile
I got somewhat organized...
Here are all my regular meds! This does not include the 8 more that are (as needed).
Lots of colors
Here are all my regular meds! This does not include the 8 more that are (as needed).
Is this working
Shouldn't antibiotics be working by now?
Taking Cipro 10 day antibiotics for uti. Still really really painful. Drinking tons of water. Started antibiotics Thursday evening, this is Monday morning.
Woke up with awful nausea stomache ache from having empty tummy.... Thankfully James bringing me breakfast in bed before he goes to work is our new thing! Faster I get protein in my stomach, the faster the ickies subside. I was armed and ready with a giant cup of ginger tea to take my mound of pills this morning (Lately stomach pain is the worst half hour after taking upped Tecfidera).
No leg pain this morning! Some arm pain.... Lots of bladder pain. Legs are fairly steady, but reaction is very delayed this morning to get them to walk.
Taking Cipro 10 day antibiotics for uti. Still really really painful. Drinking tons of water. Started antibiotics Thursday evening, this is Monday morning.
Woke up with awful nausea stomache ache from having empty tummy.... Thankfully James bringing me breakfast in bed before he goes to work is our new thing! Faster I get protein in my stomach, the faster the ickies subside. I was armed and ready with a giant cup of ginger tea to take my mound of pills this morning (Lately stomach pain is the worst half hour after taking upped Tecfidera).
No leg pain this morning! Some arm pain.... Lots of bladder pain. Legs are fairly steady, but reaction is very delayed this morning to get them to walk.
Sunday, August 14, 2016
Tummy ickies, UTI, Food Stamp issues.
Yesterday... Saturday August 13th
Not feeling so great the past two days. Energy level is a zero today. UTI is really taking a toll.
Tecfidera, my new MS medication was bumped up yesterday too. My body is disliking it. Stomach pain/nausea is back and trying to get it under control. Even my ginger tea does not do much. That paired with painful UTI it is really bogging me down. Not sure that I want to stress my body with stepping down from Prednisone today, to add to everything. I think I Will wait a few days to step from 50 mg to 45 mg. Last thing I need right now is a bunch of hives.
Today! Sunday August 16th
Bad bladder pain.. Drinking lots of water.
Took a percocet instead of dillaudid and it definitely helped the pain! Mornings have NOT been good since upping the Tecfidera. Tummy pain and nausea every morning. Hoping it levels out agsin!
I got a letter in the mail stating no food stamps UNTIL I have a doctor's note, OR fill out a Disability appplication. My primary doc is out of office till Monday....
I want to read up on Disability because I know it has advantages and disadvantages and it is a tricky process. I want to do it right. Hoping my doc will just fax a note.
James is cleaning the kitchen and did all the dishes! Cooking a roast with cabbage in the crock pot.
I somewhat cleaned our Zen room sitting down. Rolling around in my computer chair I was able to use a broom and sweep up dog hair. Standing is too much energy. Wipes me out fast. It was an accomplishment! James mopped the floors too.... We have so many things on our "to do" list.
After sweeping I am super tired. Tops of my thighs (quads) are twitching and clenching. My arms are doing alright though at the moment. Bladder still really hurts... I think it is pain med. time.
Friday, August 12, 2016
Assistance with Food Stamps!
I wanted to note, that I was able to get some assistance with Food Stamps!
James did the application for me, government web sites are a serious stress trigger for me, so I will not allow myself to try to analyze them anymore! Thank you honey for doing this for me...
The program here in Nevada is called SNAP
They called me and I did a phone interview to see if I was eligible etc. (funnily enough, the lady that I was interviewing with has Multiple Sclerosis as well!) I kind of explained my situation, newly disgnosed, in the hospital and cannot work at the moment due to MS. Normally they make anyone on the SNAP program go to classes to help with writing resumes etc. My case is that I know HOW to efficiently make an income, but physically and mentally I cannot right now due to Multiple Sclerosis.
So... I had the choice of having a doctor fax a note, OR fill out a SSDI application. The nice lady put a ten day grace period on that so I have till the 19th.
Essentially I need a note saying I was recently diagnosed,was in the hospital for two weeks, discharged but still in bad condition and unable to work at this time. Honestly the hospital thought it unsafe for me to be home alone at home let alone trying to work.
Dr. Jackson my pen pal Neuro does not have access to my hospital records, my New neuro doc appt. is not until September. So I am in Neurologist limbo.
The only person who knows my whole story is Dr. Snow, my primary doctor. He will not be in the office till Monday but I did leave a detailed message about needing his help!
Moral of this story! I was eligible and will be getting some money every month for the expensive food I have to buy to keep at this diet. That is a start....
James did the application for me, government web sites are a serious stress trigger for me, so I will not allow myself to try to analyze them anymore! Thank you honey for doing this for me...
The program here in Nevada is called SNAP
They called me and I did a phone interview to see if I was eligible etc. (funnily enough, the lady that I was interviewing with has Multiple Sclerosis as well!) I kind of explained my situation, newly disgnosed, in the hospital and cannot work at the moment due to MS. Normally they make anyone on the SNAP program go to classes to help with writing resumes etc. My case is that I know HOW to efficiently make an income, but physically and mentally I cannot right now due to Multiple Sclerosis.
So... I had the choice of having a doctor fax a note, OR fill out a SSDI application. The nice lady put a ten day grace period on that so I have till the 19th.
Essentially I need a note saying I was recently diagnosed,was in the hospital for two weeks, discharged but still in bad condition and unable to work at this time. Honestly the hospital thought it unsafe for me to be home alone at home let alone trying to work.
Dr. Jackson my pen pal Neuro does not have access to my hospital records, my New neuro doc appt. is not until September. So I am in Neurologist limbo.
The only person who knows my whole story is Dr. Snow, my primary doctor. He will not be in the office till Monday but I did leave a detailed message about needing his help!
Moral of this story! I was eligible and will be getting some money every month for the expensive food I have to buy to keep at this diet. That is a start....
Another UTI Infection??
Friday, August 11th
I am glad it is Friday...
I think I have (another) Bladder/UTI infection, back to having to chug water again. I was drinking a LOT of water wih last UTI, but I have been slacking. I need a reminder for everything!
It is making me feel kinda blahh all over. Thankfully have a 10 day Cipro antibiotic refill that James will be picking up this evening. Woke up this morning with my tummy churning. Hurt and nauseous.... Eating did not even help much. I drank a bunch of ginger tea and it only helped slightly. A small bit of Tropicanna MM got rid of the tummy ache, nausea, and bladder pain, it got me out of bed!
Made it to my Zen room earlier, my Snails keep me busy with small projects, did a water change for the babies and that wiped me out! Legs functioned much better this morning than last night. For some reason, saying out loud in my head "left" "right" while walking seems to help the message get to my legs that they need to listen and move it!
After a water change arm/leg pain came back.. I resorted to:
3:00 pm- 1 Dillaudid and 1 Valium and laying in bed for a while.....
I am glad it is Friday...
I think I have (another) Bladder/UTI infection, back to having to chug water again. I was drinking a LOT of water wih last UTI, but I have been slacking. I need a reminder for everything!
It is making me feel kinda blahh all over. Thankfully have a 10 day Cipro antibiotic refill that James will be picking up this evening. Woke up this morning with my tummy churning. Hurt and nauseous.... Eating did not even help much. I drank a bunch of ginger tea and it only helped slightly. A small bit of Tropicanna MM got rid of the tummy ache, nausea, and bladder pain, it got me out of bed!
Made it to my Zen room earlier, my Snails keep me busy with small projects, did a water change for the babies and that wiped me out! Legs functioned much better this morning than last night. For some reason, saying out loud in my head "left" "right" while walking seems to help the message get to my legs that they need to listen and move it!
After a water change arm/leg pain came back.. I resorted to:
3:00 pm- 1 Dillaudid and 1 Valium and laying in bed for a while.....
Catch up posts!
I realize I have not posted here for a few days...
It is easy to jot down on facebook how I am doing, I will update!!
Tuesday July 9th - overall very good day!
I have a Desktop Computer back! Sort of...
My files are all in strange places as my computer crashed hard for some reason when I was in the hospital, and all files had to be backed up and transferred. My monitor crashed as well! So adjusting to a different looking screen.
This morning was pretty good!
James has been waking me up with breakfast so that I don't have the *ickies* for too long, from no food in my stomach due to Tecfidera. I've been sipping ginger tea throughout the day and actually I think I can get away with not eating food every two hrs which is good. It's a long walk to the kitchen some days lol.
Ginger Root... Ground up and boiled to make a tea.
Legs work a bit better today, not as weak as yesterday. Up and walking around the house this morning. Starting to get shooting pains down my arms and legs though so I may have to put some heat on it and take some meds. I would REALLY like to inventory our food in the kitchen and plan some meals out to try and make life easier on everyone. Cooking ahead of time would help I think.... I just have not had the energy to actually do it. Would hate for our fresh veggies to spoil... eating a diet made of only Fresh or frozen Fruit, Veggies and Meat is expensive! Expensive but necessary.
Maybe a farmer's market would be cheaper on fruits/veggies? I haven't researched the ones in my
area. I just hate finding old shrivelled up cucumbers in the back of the fridge. We need a system! Ok
I'm off to stick socks on my arms before pain gets too bad...
Wednesday, July 10th - emotional day, pain was not too bad, able to move some
Thursday, August 11th - fairly good day!
It has been a day!
Spent a good part of it doing research for my Luna girl, did some snail stuff and got to visit with my mom for a while who awesomely surprised me with groceries! The past few mornings I have been able to get up and hobble somewhat into our computer room. (I also call it my Zen room) I have my small Mystery Snail hatchery going on in there, very relaxing to watch them. Keeps the stress away!
This is a big improvement from being stuck in bed! It may not sound like much, but mentally and physically it's huge. Getting out of bed even if I am sitting in a chair at my desktop computer I feel a lot less useless. I think I over did it today though tinkering with snail stuff. Pain is really bad in arms/legs but have taken some meds for it, and have heat on them right now. Baby steps. I am thankful to have had a pretty good day today!
It is easy to jot down on facebook how I am doing, I will update!!
Tuesday July 9th - overall very good day!
I have a Desktop Computer back! Sort of...
My files are all in strange places as my computer crashed hard for some reason when I was in the hospital, and all files had to be backed up and transferred. My monitor crashed as well! So adjusting to a different looking screen.
This morning was pretty good!
James has been waking me up with breakfast so that I don't have the *ickies* for too long, from no food in my stomach due to Tecfidera. I've been sipping ginger tea throughout the day and actually I think I can get away with not eating food every two hrs which is good. It's a long walk to the kitchen some days lol.
Ginger Root... Ground up and boiled to make a tea.
Legs work a bit better today, not as weak as yesterday. Up and walking around the house this morning. Starting to get shooting pains down my arms and legs though so I may have to put some heat on it and take some meds. I would REALLY like to inventory our food in the kitchen and plan some meals out to try and make life easier on everyone. Cooking ahead of time would help I think.... I just have not had the energy to actually do it. Would hate for our fresh veggies to spoil... eating a diet made of only Fresh or frozen Fruit, Veggies and Meat is expensive! Expensive but necessary.
Maybe a farmer's market would be cheaper on fruits/veggies? I haven't researched the ones in my
area. I just hate finding old shrivelled up cucumbers in the back of the fridge. We need a system! Ok
I'm off to stick socks on my arms before pain gets too bad...
Wednesday, July 10th - emotional day, pain was not too bad, able to move some
Thursday, August 11th - fairly good day!
It has been a day!
Spent a good part of it doing research for my Luna girl, did some snail stuff and got to visit with my mom for a while who awesomely surprised me with groceries! The past few mornings I have been able to get up and hobble somewhat into our computer room. (I also call it my Zen room) I have my small Mystery Snail hatchery going on in there, very relaxing to watch them. Keeps the stress away!
This is a big improvement from being stuck in bed! It may not sound like much, but mentally and physically it's huge. Getting out of bed even if I am sitting in a chair at my desktop computer I feel a lot less useless. I think I over did it today though tinkering with snail stuff. Pain is really bad in arms/legs but have taken some meds for it, and have heat on them right now. Baby steps. I am thankful to have had a pretty good day today!
Monday, August 8, 2016
Bad Symptoms and Pain
9:30 am took all Morning meds
Not a great morning.
Everything is super weak.. Currently I am typing sideways on my ipad, laying in bed. My head feels way too heavy for my shoulders, sitting up costs too much energy. Hands and toes are tingling, and coordination is way off today. Trying to get the message from my brain to my limbs to move them is a huge delayed reaction. Everything feels disassociated and floating around me but not really attached.
Cognitives are not functioning well. Very sensitive to sounds today. My mind is dealing with all the weirdness and inability to move with panic, resulting in tears and more stress, and that is never helpful. Going to focus on breathing, that is something I CAN do.
Noon
Pain is getting bad took 1 1/2 Dillaudid and 1 Valium
1:00 pm
Sitting upwards! Biceps and quads on legs are still very painful. Eyesight is decreasing. Mood is better. I have been searching for either an app or website to track MS symptoms, Meds, Foods, etc.
Yesterday I setup a calendar schedule for James and I detailed with daily reminders and a to do list. There is so much going on we both forget important things. James worked so hard to try to get things done this weekend, we just have such a large list. Yesterday I felt so useless, it was a bad day... Walking to the bathroom was a huge effort for me. Today is a little worse.
He did get all the dogs Washed, Blowdried, Nails done, Ears cleaned yesterday! No more stinky puppies laying in bed with me.
Not a great morning.
Everything is super weak.. Currently I am typing sideways on my ipad, laying in bed. My head feels way too heavy for my shoulders, sitting up costs too much energy. Hands and toes are tingling, and coordination is way off today. Trying to get the message from my brain to my limbs to move them is a huge delayed reaction. Everything feels disassociated and floating around me but not really attached.
Cognitives are not functioning well. Very sensitive to sounds today. My mind is dealing with all the weirdness and inability to move with panic, resulting in tears and more stress, and that is never helpful. Going to focus on breathing, that is something I CAN do.
Noon
Pain is getting bad took 1 1/2 Dillaudid and 1 Valium
1:00 pm
Sitting upwards! Biceps and quads on legs are still very painful. Eyesight is decreasing. Mood is better. I have been searching for either an app or website to track MS symptoms, Meds, Foods, etc.
Yesterday I setup a calendar schedule for James and I detailed with daily reminders and a to do list. There is so much going on we both forget important things. James worked so hard to try to get things done this weekend, we just have such a large list. Yesterday I felt so useless, it was a bad day... Walking to the bathroom was a huge effort for me. Today is a little worse.
He did get all the dogs Washed, Blowdried, Nails done, Ears cleaned yesterday! No more stinky puppies laying in bed with me.
Sunday, August 7, 2016
Tecfidera Side Effect - Fatigue, and Prednisone step down
Today!
Is it possible to wake up from 9 hours of sleep exhausted? Yes, it is.
Very worn out feeling. Everything in my body aches, hives and red blotches on me. Hardly enough energy to go pee. Woke up with severe stomach pain and nausea. Today I step down again from prednisone.
55 mg a day to 50
Which brings me to talk about Tecfidera. This is day four of taking Tecfidera.... Unfortunately I noticed very quickly that it gives me stomach pain, nausea, and eventually makes me puke! This is actually one of the most common side effects. Thankfully others have figurd out a plan of attack in dealing with this side effect.
I have researched,
Implemented research, and am now stomach pain, nausea, and puke free from Tecfidera side effect. 👍
Essentially I have to keep food especially protein in my body at all times (this means eating something small every hour or two). This was hard at first, as a queasy stomach is not a fan of food but it has worked! Pain and nausea gone. Also I am not used to eating much so this is strange. I also bought more fresh ginger root to make tea... I will see how that works!
Glad to have found a solution, and to know others have gone through it as well. I hope my body will adjust soon!
Yesterday I had a decent morning!
Since it is the weekend I had a long time client with a German Shepherd who needed a good bath blowdry nails etc. james is here on weekends so I went ahead and booked the poor itchy guy
(seasonal allergies). During my good moments I almost forget that I can feel totally different in ten minutes. I felt very able yesterday morning so I took on the task of Chewy the GSD. Fatigue hit me fast and hard and literally put me on my ass. So James did most of the work! What little bit I did completely drained... I did not help much, which just really blows me away as to how little I can do
physically at the moment. It was rather upsetting really.. Things I can normally do with ease just aren't even within the realm of an easy task lately. Realizing this gives you a whole nother sense of loss-of-self, and entangles you farther into various stages of depression. I cried hard for this one... Grooming is what I love.
Fatigue hit me like a ton of bricks and could not see well or walk for the rest if the day. Frustrating.
Is it possible to wake up from 9 hours of sleep exhausted? Yes, it is.
Very worn out feeling. Everything in my body aches, hives and red blotches on me. Hardly enough energy to go pee. Woke up with severe stomach pain and nausea. Today I step down again from prednisone.
55 mg a day to 50
Which brings me to talk about Tecfidera. This is day four of taking Tecfidera.... Unfortunately I noticed very quickly that it gives me stomach pain, nausea, and eventually makes me puke! This is actually one of the most common side effects. Thankfully others have figurd out a plan of attack in dealing with this side effect.
I have researched,
Implemented research, and am now stomach pain, nausea, and puke free from Tecfidera side effect. 👍
Essentially I have to keep food especially protein in my body at all times (this means eating something small every hour or two). This was hard at first, as a queasy stomach is not a fan of food but it has worked! Pain and nausea gone. Also I am not used to eating much so this is strange. I also bought more fresh ginger root to make tea... I will see how that works!
Glad to have found a solution, and to know others have gone through it as well. I hope my body will adjust soon!
Yesterday I had a decent morning!
Since it is the weekend I had a long time client with a German Shepherd who needed a good bath blowdry nails etc. james is here on weekends so I went ahead and booked the poor itchy guy
(seasonal allergies). During my good moments I almost forget that I can feel totally different in ten minutes. I felt very able yesterday morning so I took on the task of Chewy the GSD. Fatigue hit me fast and hard and literally put me on my ass. So James did most of the work! What little bit I did completely drained... I did not help much, which just really blows me away as to how little I can do
physically at the moment. It was rather upsetting really.. Things I can normally do with ease just aren't even within the realm of an easy task lately. Realizing this gives you a whole nother sense of loss-of-self, and entangles you farther into various stages of depression. I cried hard for this one... Grooming is what I love.
Fatigue hit me like a ton of bricks and could not see well or walk for the rest if the day. Frustrating.
Friday, August 5, 2016
Arrival of Tecfidera
Tecfidera has arrived!
It came shipped to my doorstep in a cooler on ice. No, seriously. It also came with lots of promotional thingies which were fun to open. (A bag, water bottle, calendar n stuff).
I am taking it with aspirin to help with hot flashes. Day Two, so far so good.
Yesterday was a good day. I took far less pain medication with the aid of MM, and even got a few things done around the house! That is a vast improvement from being in bed and in tears from pain.
Aug 5th 1:20 pm - Pain was beginning to get bad in arms and legs, put some heat on my muscles and tried Tropicanna.
Tropicanna Strain proved to be both uplifting and relaxing to the muscles. It smooths out clenches better than SinCity OG and daytime functionality is awesome. Head high is light.
Legs worked much better after using Tropicanna and pain was much lesser. Hand coordination improved as well. Does not go down smooth, very dry and no flavor. (Not that it is an issue) just a valid note. After not feeling well for so long, I had a few hours of feeling "normalish". Pain was only a faraway annoyance, and many symptoms diminished to the point that for the most part I could ignore them and focus on other things. I am liking Tropicanna.
It came shipped to my doorstep in a cooler on ice. No, seriously. It also came with lots of promotional thingies which were fun to open. (A bag, water bottle, calendar n stuff).
I am taking it with aspirin to help with hot flashes. Day Two, so far so good.
Yesterday was a good day. I took far less pain medication with the aid of MM, and even got a few things done around the house! That is a vast improvement from being in bed and in tears from pain.
Aug 5th 1:20 pm - Pain was beginning to get bad in arms and legs, put some heat on my muscles and tried Tropicanna.
Tropicanna Strain proved to be both uplifting and relaxing to the muscles. It smooths out clenches better than SinCity OG and daytime functionality is awesome. Head high is light.
Legs worked much better after using Tropicanna and pain was much lesser. Hand coordination improved as well. Does not go down smooth, very dry and no flavor. (Not that it is an issue) just a valid note. After not feeling well for so long, I had a few hours of feeling "normalish". Pain was only a faraway annoyance, and many symptoms diminished to the point that for the most part I could ignore them and focus on other things. I am liking Tropicanna.
Thursday, August 4, 2016
Medical Marijuana Finalized
Yesterday was a really busy day..
Pain was out of control so I decided to just bite the bullet and take matters into my own hands and get my Medical Marijuana card finalized. It was quite the process, But thanks to the help of my mom I got my papers signed settled and driven to Carson City to get my official papers.
I was drained after such a busy day, speech was ridiculous when I managed to get anything out. My hands were so shaky, my body ached, I could not stand without help. On the way to the dispensary here in Reno my vision was so bad I thought a bush on the side of the road was a dog. (No, I was NOT driving lol)
I got three seperate grams of three seperate strains. All recommended for neurological pain.
SinValley OG - Recommended as a muscle relaxing nighttime strain
Tropicanna - Recommended as the same but for daytime functionality
Sour Kush - A good in betweener
Sin Valley OG
I finally got to sit down and relax, my body was vibrating with pain and overstimulation from my long day. Sin Valley OG went down smooth. What I noticed first was my leg muscles smoothing out as they were twisted up in clenched knots and spasming badly. I only got this feeling from Morphine in the hospital, and had not felt that kind of relief since. What I noticed second was my overall pain lessening to a very tolerable level. I also got a mood boost which was really nice considering the pent up stress of my day. I was impressed! I had a small head high but still very functional.
After such a busy day I was unable to walk, but surprisingly I was able to get up and walk down my
hall to the kitchen without the wheelchair after use. Huge difference between pain pills and Medical
Marijuana. I am just so happy to have felt such relief from so many symptoms, especially with them
worsening over the past few days.
Pain was out of control so I decided to just bite the bullet and take matters into my own hands and get my Medical Marijuana card finalized. It was quite the process, But thanks to the help of my mom I got my papers signed settled and driven to Carson City to get my official papers.
I was drained after such a busy day, speech was ridiculous when I managed to get anything out. My hands were so shaky, my body ached, I could not stand without help. On the way to the dispensary here in Reno my vision was so bad I thought a bush on the side of the road was a dog. (No, I was NOT driving lol)
I got three seperate grams of three seperate strains. All recommended for neurological pain.
SinValley OG - Recommended as a muscle relaxing nighttime strain
Tropicanna - Recommended as the same but for daytime functionality
Sour Kush - A good in betweener
Sin Valley OG
I finally got to sit down and relax, my body was vibrating with pain and overstimulation from my long day. Sin Valley OG went down smooth. What I noticed first was my leg muscles smoothing out as they were twisted up in clenched knots and spasming badly. I only got this feeling from Morphine in the hospital, and had not felt that kind of relief since. What I noticed second was my overall pain lessening to a very tolerable level. I also got a mood boost which was really nice considering the pent up stress of my day. I was impressed! I had a small head high but still very functional.
After such a busy day I was unable to walk, but surprisingly I was able to get up and walk down my
hall to the kitchen without the wheelchair after use. Huge difference between pain pills and Medical
Marijuana. I am just so happy to have felt such relief from so many symptoms, especially with them
worsening over the past few days.
Really bad day
August 2nd 2016
Can things go from bad to worse?
Yes they can.
Not a pleasant day.
Pain is forever in the background, but today it has been a huge struggle attempting to make it tolerable.
Making it from them bedroom to the kitchen zapped me of all energy this morning. I had to lay on the couch and take a few hour nap to be able to make it back to the bedroom again.
Fatigue and pain today is crazy BAD.
Pain is mostly settling into my neck and biceps, my right arm is going half numb and has the tinglies. Painfully (and would be almost amusing if my mood were better) my muscles are spasming so hard you can see it twitch from the outside.
Still have gotten nowhere with the missing link of the three meds to control pain. (Out of Torodol) I take Dilaudid, Lyrica, and Torodol in between for pain. It is an NSAID but a powerful one that is activated by the dilaudid. Taking it out of the equation was disastrous. Insurance issues....
Can things go from bad to worse?
Yes they can.
Not a pleasant day.
Pain is forever in the background, but today it has been a huge struggle attempting to make it tolerable.
Making it from them bedroom to the kitchen zapped me of all energy this morning. I had to lay on the couch and take a few hour nap to be able to make it back to the bedroom again.
Fatigue and pain today is crazy BAD.
Pain is mostly settling into my neck and biceps, my right arm is going half numb and has the tinglies. Painfully (and would be almost amusing if my mood were better) my muscles are spasming so hard you can see it twitch from the outside.
Still have gotten nowhere with the missing link of the three meds to control pain. (Out of Torodol) I take Dilaudid, Lyrica, and Torodol in between for pain. It is an NSAID but a powerful one that is activated by the dilaudid. Taking it out of the equation was disastrous. Insurance issues....
Monday, August 1, 2016
Bad Day
Monday August 1st
I had a few positive progressive feeling days!
Yesterday and today not so much. Weaker, my speech gets all jumbled. Eyes are very blurry, pain is worse. Very twitchy, muscle clenches. Generally feel like crap. Very emotional. Trying to distract my brain away from it all with ipad things while I lay in bed trying to heat away the pain.
It is frustrating, but I have to realize that I will have ups and downs. Today is very much a down. This is not something that I will "get better" from, but I am hoping to get stronger enough to be functional again, however long that takes. Thats a good goal. It is depressing though when you have such good days and you go back to hardly being able to move.
Having issues with pharmacist errors over pain meds, if anything makes me a crabasaurusrex it's bad pain. Pharmacist messed up and now I am without one of the three key elements to help with pain.
Positively today our rent will get paid this month! Big thanks to family for helping us out.... It is appreciated more than you know!! I got a call from the company who has been working for a few months on getting me MS medication called Tecfidera. Insurance cleared it and they will be shipping it to me every month starting Wednesday. Yayyyy.
I had a few positive progressive feeling days!
Yesterday and today not so much. Weaker, my speech gets all jumbled. Eyes are very blurry, pain is worse. Very twitchy, muscle clenches. Generally feel like crap. Very emotional. Trying to distract my brain away from it all with ipad things while I lay in bed trying to heat away the pain.
It is frustrating, but I have to realize that I will have ups and downs. Today is very much a down. This is not something that I will "get better" from, but I am hoping to get stronger enough to be functional again, however long that takes. Thats a good goal. It is depressing though when you have such good days and you go back to hardly being able to move.
Having issues with pharmacist errors over pain meds, if anything makes me a crabasaurusrex it's bad pain. Pharmacist messed up and now I am without one of the three key elements to help with pain.
Positively today our rent will get paid this month! Big thanks to family for helping us out.... It is appreciated more than you know!! I got a call from the company who has been working for a few months on getting me MS medication called Tecfidera. Insurance cleared it and they will be shipping it to me every month starting Wednesday. Yayyyy.
Puffy, Hives and Pain
Sunday July 31st
Crappy painful day. Feel like a Jet-Puffed marshmellow.
Slept in till noon! Have hives all over me, hands and face are just swollen all over. This is day two of prednisone step down, I think my immune system is having a bit of a freak out. Pain has been bad since I woke up this morning (afternoon I should say). Thank goodness for rice socks. This deep aching pain is helped by heat. What is a rice sock? A large mens sock mostly filled with rice and tied off. For heat, I microwave it for 3 minutes. For cold, I put it in the freezer for a few hours. Everybody shoukd have a rice sock!t
Worried bout the dreaded first of the month (rent due). Worry=Stress and Stress=Symptoms Worsening. Trying not to think about it. With me being unable to work, that takes a big chunk out of our normal income. It is incredibly frustrating... If I push myself too hard I feel awful for days. So so thankful for my significant other James Kessel . I know a lot of responsibilities are weighing on him right now, he works hard full time, comes home and cooks paleo/gaps friendly dinner for us both, feeds and takes care of our animals (and now me, since I cannot do much at the moment). He has been so supportive during all of this mess. I am very appreciative and lucky to have such a great guy. Love you honey 💜
Crappy painful day. Feel like a Jet-Puffed marshmellow.
Slept in till noon! Have hives all over me, hands and face are just swollen all over. This is day two of prednisone step down, I think my immune system is having a bit of a freak out. Pain has been bad since I woke up this morning (afternoon I should say). Thank goodness for rice socks. This deep aching pain is helped by heat. What is a rice sock? A large mens sock mostly filled with rice and tied off. For heat, I microwave it for 3 minutes. For cold, I put it in the freezer for a few hours. Everybody shoukd have a rice sock!t
Worried bout the dreaded first of the month (rent due). Worry=Stress and Stress=Symptoms Worsening. Trying not to think about it. With me being unable to work, that takes a big chunk out of our normal income. It is incredibly frustrating... If I push myself too hard I feel awful for days. So so thankful for my significant other James Kessel . I know a lot of responsibilities are weighing on him right now, he works hard full time, comes home and cooks paleo/gaps friendly dinner for us both, feeds and takes care of our animals (and now me, since I cannot do much at the moment). He has been so supportive during all of this mess. I am very appreciative and lucky to have such a great guy. Love you honey 💜
A few Good Mornings!
Thursday July 28th, Friday July 29th, and Saturday July 30th
Again,
Mornings have been good! After getting meds in me and james getting me breakfast and tea, I get a good couple of hours before symptoms really start to bother me. Using the wheelchair as something to hold onto to make it into the kitchen has been very useful. Trying to do what I can while I have pain medication in me! It is very hard to find that happy medium where you are still pushing your limit but not pushing to hard. And it is not even consistent, each day is different. The addition of lyrica really shows. And the addition of Valium really helps me pee!
We put a hefty plastic lawn chair in the bedroom walk in shower that works perfect. The hot water helps so much when I am in a lot of pain. It's weird because I have to keep my head cool, and only focus hot water on certain muscle spasming or deep bone type pain.
Again,
Mornings have been good! After getting meds in me and james getting me breakfast and tea, I get a good couple of hours before symptoms really start to bother me. Using the wheelchair as something to hold onto to make it into the kitchen has been very useful. Trying to do what I can while I have pain medication in me! It is very hard to find that happy medium where you are still pushing your limit but not pushing to hard. And it is not even consistent, each day is different. The addition of lyrica really shows. And the addition of Valium really helps me pee!
We put a hefty plastic lawn chair in the bedroom walk in shower that works perfect. The hot water helps so much when I am in a lot of pain. It's weird because I have to keep my head cool, and only focus hot water on certain muscle spasming or deep bone type pain.
Awesome Morning!
Wednesday July 27th
I woke up with no pain!
This was more than awesome. I was much less weak, and could walk around some for half an hour before a wave of pain and weakness hit me. My morning was pretty great, my body seems to do well right after sleeping whether at night or a nap. Wed evening was pretty painful. Went to bed early for much needed rest.
I woke up with no pain!
This was more than awesome. I was much less weak, and could walk around some for half an hour before a wave of pain and weakness hit me. My morning was pretty great, my body seems to do well right after sleeping whether at night or a nap. Wed evening was pretty painful. Went to bed early for much needed rest.
Saw Primary care Dr. And got Foley Catheter out (infection)
Tuesday July 26th
Had an afternoon appointment with my Primary Dr. Snow. Thankfully my mom was able to take me, as James works during the day and there is no chance I could drive myself. Catheter was beginning to burn. Thanks mom ❤️ I really do appreciate all you have done for us during these crazy few months.
This was the second time I had seen Dr. Snow, he stepped in for a last minute appointment when my former Neurologist (now my pen pal Neurologist as we correspond through email) left the practice.
Given my circumstance and need for a primary care doctor, he also agreed to take me on as a patient during our last visit.
I came armed and ready with a list, but as soon as the doc walked in the room and saw that I was still attached to the Foley Catheter he said "That looks infected". And actually in the time we were sitting in the waiting room it had begun to look red and cloudy and I was feeling worse than I already was earlier. It was definitely agreed that it must come out, and I should be given oral antibiotics plus a booster shot in the butt so this does not turn into something more serious. I gave him the rundown on my hospital stay and a list of medications I was taking.
We addressed the Lyrica issue, and thankfully he had a bunch of samples that he gave me which will last at least a month or so, then integrate it to Gabbapentin and taper that upwards. Thankfully insurance covers Gabbapentin.
150 mg Lyrica in the morning, 75 at night.
Cipro was decided upon for my uti infection
I explained my prednisone "issue" and how tapering down is dangerous but needs to be done. Amazingly he actually listened to why my immune system attacks itself once it is not given an antihistamine it is used to taking. I will taper prednisone by 5 mg every 7-10 days until I reach 30 mg, then we will create a new plan from there.
I addressed my inhaler, and need for one with refills. He then went into detail about me being on a preventative steroidal asthma inhaler as well. Unfortunately my insurance does not cover this, it was $450 for a one month supply. It was somethung that I am sure woukd benefit me, but unaffordable.
He again brought me 3 (sample) steroidal inhalers Symbicort to help prevent bad asthma, which was very nice of him to do.
We got the foley out (SUPER PAINFUL!) and he mentioned a muscle relaxer to maybe help loosen bladder bowels since my wires are not getting the message from brain to my parts to be able to use the bathroom. Valium twice a day was prescribed. And actually I think they gave me that last time this happened 12 Yrs ago as well.
He sent a referral to Dr. Slotnik. This is the gene doctor that can test me to see if I have the cancer gene brca1 or not. Fifty fifty chance, kind of scary.
We discussed the Dilaudid, and how I should try to wean myself to taking less as I am feeling less pain, which is a good idea. I intend on getting my Medical Cannabis card soon, so that will help a lot pain wise and I will not have to rely on addictive and harm causing narcotics.
My doctor actually spent a lot of time with me, and addressed every single issue with a solution. I was very impressed, and releived!
My energy was shot after my appointment, fatigue and pain was getting the better of me. Guess who could pee that night after taking Valium? Yup, this girl. I painfully was trying to flush my system of infection with tons of water. Seemed to work in conjunction with antibiotics.
Had an afternoon appointment with my Primary Dr. Snow. Thankfully my mom was able to take me, as James works during the day and there is no chance I could drive myself. Catheter was beginning to burn. Thanks mom ❤️ I really do appreciate all you have done for us during these crazy few months.
This was the second time I had seen Dr. Snow, he stepped in for a last minute appointment when my former Neurologist (now my pen pal Neurologist as we correspond through email) left the practice.
Given my circumstance and need for a primary care doctor, he also agreed to take me on as a patient during our last visit.
I came armed and ready with a list, but as soon as the doc walked in the room and saw that I was still attached to the Foley Catheter he said "That looks infected". And actually in the time we were sitting in the waiting room it had begun to look red and cloudy and I was feeling worse than I already was earlier. It was definitely agreed that it must come out, and I should be given oral antibiotics plus a booster shot in the butt so this does not turn into something more serious. I gave him the rundown on my hospital stay and a list of medications I was taking.
We addressed the Lyrica issue, and thankfully he had a bunch of samples that he gave me which will last at least a month or so, then integrate it to Gabbapentin and taper that upwards. Thankfully insurance covers Gabbapentin.
150 mg Lyrica in the morning, 75 at night.
Cipro was decided upon for my uti infection
I explained my prednisone "issue" and how tapering down is dangerous but needs to be done. Amazingly he actually listened to why my immune system attacks itself once it is not given an antihistamine it is used to taking. I will taper prednisone by 5 mg every 7-10 days until I reach 30 mg, then we will create a new plan from there.
I addressed my inhaler, and need for one with refills. He then went into detail about me being on a preventative steroidal asthma inhaler as well. Unfortunately my insurance does not cover this, it was $450 for a one month supply. It was somethung that I am sure woukd benefit me, but unaffordable.
He again brought me 3 (sample) steroidal inhalers Symbicort to help prevent bad asthma, which was very nice of him to do.
We got the foley out (SUPER PAINFUL!) and he mentioned a muscle relaxer to maybe help loosen bladder bowels since my wires are not getting the message from brain to my parts to be able to use the bathroom. Valium twice a day was prescribed. And actually I think they gave me that last time this happened 12 Yrs ago as well.
He sent a referral to Dr. Slotnik. This is the gene doctor that can test me to see if I have the cancer gene brca1 or not. Fifty fifty chance, kind of scary.
We discussed the Dilaudid, and how I should try to wean myself to taking less as I am feeling less pain, which is a good idea. I intend on getting my Medical Cannabis card soon, so that will help a lot pain wise and I will not have to rely on addictive and harm causing narcotics.
My doctor actually spent a lot of time with me, and addressed every single issue with a solution. I was very impressed, and releived!
My energy was shot after my appointment, fatigue and pain was getting the better of me. Guess who could pee that night after taking Valium? Yup, this girl. I painfully was trying to flush my system of infection with tons of water. Seemed to work in conjunction with antibiotics.
Made primary appt. Found a Neurologist!
Monday July 25th
My foley catheter was becoming more uncomfortable, and my bladder hurt. I was really hoping I could pee on my own once it was taken out... I tried to judge it by the last time this all happend 12 years ago, and I needed a Foley catheter for about two weeks then. This was day 12. Since it was reccomended that I see my primary care Doctor Snow after hospitalization (and the fact that I was still attached to a catheter) I got an appointment for the next day!
I also got an appointment to see a Neurologist Dr. Kreiss for September 28th (but I am on the cancellation list). He is my Mom's husbands Neurologist, he has MS as well. (Small world hah) I am glad this Neuro agreed to take me as a patient. There are zero Neurologists within Northern Nevada right now who are currently taking new medicaid patients. Many made this their policy as of the first of the year as medicaid does not pay them well enough. This makes it very hard for people with medicaid to get much help health wise.
I made a list of questions and concerns for my Primary doc. I was able to pick up all prescriptions except for Lyrica due to insurance not covering the very expensive medication, and I could feel a huge difference. lyrica, Dilaudid, and Ketoroloc are my pain management medications. Taking Lyrica out of the equation was a bad thing.
My foley catheter was becoming more uncomfortable, and my bladder hurt. I was really hoping I could pee on my own once it was taken out... I tried to judge it by the last time this all happend 12 years ago, and I needed a Foley catheter for about two weeks then. This was day 12. Since it was reccomended that I see my primary care Doctor Snow after hospitalization (and the fact that I was still attached to a catheter) I got an appointment for the next day!
I also got an appointment to see a Neurologist Dr. Kreiss for September 28th (but I am on the cancellation list). He is my Mom's husbands Neurologist, he has MS as well. (Small world hah) I am glad this Neuro agreed to take me as a patient. There are zero Neurologists within Northern Nevada right now who are currently taking new medicaid patients. Many made this their policy as of the first of the year as medicaid does not pay them well enough. This makes it very hard for people with medicaid to get much help health wise.
I made a list of questions and concerns for my Primary doc. I was able to pick up all prescriptions except for Lyrica due to insurance not covering the very expensive medication, and I could feel a huge difference. lyrica, Dilaudid, and Ketoroloc are my pain management medications. Taking Lyrica out of the equation was a bad thing.
Home again after two weeks in the Hospital
Sunday July 24th
I am home! James cleaned up the bedroom really well and made sure the wheelchair had room to get around. To me Sunday was a blur. I mostly slept and James took care of giving me the correct meds when needed. He very diligently took notes:
Foley Catheter has been in for 11 days
Lots of hives all over
9:35 - Dilaudid given
10:50 - Miralax, 60 mg Prednisone, Famotidine, Clonazepam, Carbamazepine, Venlafaxine, Vitamin D, B12, Benedryl (has lots of hives)
11:20 Ketorolac given (still in a lot of pain)
1:35 - Walked to living room with help, got very weak. She took a nap for a few hours on couch.
3:35 - Dilaudud given
4:50 Benedryl given
6:10 Ketorolac given
8:00 Walked back to bedroom with help
9:35 pm Mirtazapine, Melatonin, Levothyroxine, Famotidine, and Dilaudid given
11:10 pm Benedryl given
I am home! James cleaned up the bedroom really well and made sure the wheelchair had room to get around. To me Sunday was a blur. I mostly slept and James took care of giving me the correct meds when needed. He very diligently took notes:
Foley Catheter has been in for 11 days
Lots of hives all over
9:35 - Dilaudid given
10:50 - Miralax, 60 mg Prednisone, Famotidine, Clonazepam, Carbamazepine, Venlafaxine, Vitamin D, B12, Benedryl (has lots of hives)
11:20 Ketorolac given (still in a lot of pain)
1:35 - Walked to living room with help, got very weak. She took a nap for a few hours on couch.
3:35 - Dilaudud given
4:50 Benedryl given
6:10 Ketorolac given
8:00 Walked back to bedroom with help
9:35 pm Mirtazapine, Melatonin, Levothyroxine, Famotidine, and Dilaudid given
11:10 pm Benedryl given
Going to an in-care Physical Therapy Facility! Or not...?
July 23rd - leaving Hospital to go to recommended Physical Therapy Facility.
So, exiting the hospital to physical rehab wasn't that at all. More like a very cruel joke. The front of the place looked nice! Air conditioned lobby and all.. I was nervous, but hopeful and ready to work on myself. As we got near he living quarters a strong smell of urine was overwhelming. There was no more air conditioning, it was a good breezeless 90 degrees in there.
Rooms are open with 2-3 beds in each one. (Each blaring tvs on different stations) I was set in a room and the transport made a sick joke that my roommate was a quiet one and (literally) not very alive. Mind you I had not passed anyone under the age of eighty and not half catatonic. They talked amongst themselves that they needed to flip me and give me a "skin" check. Wtf? Since I am extremely sensitive to loud noises right now due to ms I asked to switch rooms since my roommate in a coma had her tv blasting an old war movie.
Next room was quite a bit worse noise wise, smaller, and hotter than the last with a very rude roomate. Ms patients need cool air, simple as that. I wAs getting nauseous and sweaty and worried. A nurse who saw my food allergy list said she did not know what they would be feeding me then. Very reassuring.
After an hour of heat and increasing pain because of it we decided this was definitely not a good environment for me. I talked to the one doctor in the place who tried to fear monger her way into making me stay, not to mention she had very little knowledge about m.s. They refused to help with finding a neurologist, or possible at home care until I signed that I would be staying for a lengthy stay. Fortunatelyd for me, I have most my wits about me and saw it as the unsanitary neglectful nursing home it truly was.
That was not vigorous physicalbrehabilitation, that was a place you sit in bed till you die. Hospital did not want me back as they cannot find any help for me due to insurance. So I just went home. Catheter still attached and all. I got all needed prescriptions but one, which I Suppose I will have to fight for. Back to square one... Even as stressful as it is I will have to start calling places and neuros again to try for help. I am beyond tired of fighting. At least on the positive side, I am doing a great job strengthening my own self. Professional physical therapy would be nice but if unattainable I will manage just fine.
So, exiting the hospital to physical rehab wasn't that at all. More like a very cruel joke. The front of the place looked nice! Air conditioned lobby and all.. I was nervous, but hopeful and ready to work on myself. As we got near he living quarters a strong smell of urine was overwhelming. There was no more air conditioning, it was a good breezeless 90 degrees in there.
Rooms are open with 2-3 beds in each one. (Each blaring tvs on different stations) I was set in a room and the transport made a sick joke that my roommate was a quiet one and (literally) not very alive. Mind you I had not passed anyone under the age of eighty and not half catatonic. They talked amongst themselves that they needed to flip me and give me a "skin" check. Wtf? Since I am extremely sensitive to loud noises right now due to ms I asked to switch rooms since my roommate in a coma had her tv blasting an old war movie.
Next room was quite a bit worse noise wise, smaller, and hotter than the last with a very rude roomate. Ms patients need cool air, simple as that. I wAs getting nauseous and sweaty and worried. A nurse who saw my food allergy list said she did not know what they would be feeding me then. Very reassuring.
After an hour of heat and increasing pain because of it we decided this was definitely not a good environment for me. I talked to the one doctor in the place who tried to fear monger her way into making me stay, not to mention she had very little knowledge about m.s. They refused to help with finding a neurologist, or possible at home care until I signed that I would be staying for a lengthy stay. Fortunatelyd for me, I have most my wits about me and saw it as the unsanitary neglectful nursing home it truly was.
That was not vigorous physicalbrehabilitation, that was a place you sit in bed till you die. Hospital did not want me back as they cannot find any help for me due to insurance. So I just went home. Catheter still attached and all. I got all needed prescriptions but one, which I Suppose I will have to fight for. Back to square one... Even as stressful as it is I will have to start calling places and neuros again to try for help. I am beyond tired of fighting. At least on the positive side, I am doing a great job strengthening my own self. Professional physical therapy would be nice but if unattainable I will manage just fine.
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