So the title basically says how part of my last week has been. I like to keep things exciting and dealing with a random cow did add some excitement to the week. I will get to cow part of my story later in this blog, don’t worry, but for now we will focus on the fact that the steroids are pretty much completely out of my system. I could tell the week prior that the amount left in my body was dwindling, but I think they are completely flushed out now. For those without MS that don’t understand what I’m talking about, when you are on steroids, especially IV steroids for longer periods of times (4+ days), it builds up in your system and stays in your system for an additional 4-6 weeks. When you are on these IV steroids you often feel amazing, many MS symptoms go away, you have more energy, it’s quite nice actually, but when they get out of your system all those nice things tend to go away and life isn’t so pleasant anymore. Usually whatever MS symptoms you normally had prior to the IV steroids come back and sometimes they can even be a bit worse for a while before they level themselves out.
Now I know some people are thinking, you had this HSCT procedure, why are your MS symptoms back. Well the HSCT procedures goal is to halt the progression of MS, it doesn’t necessarily do anything for the symptoms you already have because those are caused by the damage done to your myelin. Many people do see improvements after the procedure, but some do not, but that is a gradual thing that happens over time if your new immune system does some repair work on the damaged myelin. But back to why I didn’t have a whole lot in the way of MS symptoms for a while and now they are back. But when you are on steroids it does make many of your symptoms go away temporarily until they are out of your system. But after HSCT most people experience some sort of crash between 4-6 weeks after returning home, usually it’s temporary and then you start feeling better again, but it’ll take a while to see what symptoms stay away, which ones stick around, and then you may also see some improvements down the road. HSCT recovery is 1-2 years, sometimes a bit longer, so you have ups and downs in that time frame, some days you will feel better than ever with huge improvements, then you may have a several week period of time when you feel worse than ever, then you will improve again. You shouldn’t experience any new symptoms but you can occasionally have old symptoms pop up that you haven’t encountered for quite a while and sometimes they can be a bit worse than before, and that is because the chemo itself can cause some damage to the nerves which isn’t necessarily a big deal for a healthy person, but when you already have damage done to your nerves it can make some of your previous symptoms worse until your body recovers from the chemo. Wow, that was a lot of rambling, but hopefully you get the point.
Honestly though for the past week I’ve felt pretty good overall. I haven’t really had any overall bad days. I did have a couple of days where I was fatigued a bit during the hottest part of the day and found it hard to function during that time frame, but once the weather cooled down a bit later in the day I was fine. Fatigue has never been a major issue for me luckily, it just pops up once in a while, the only exception being when temps go above 90F, then it gets brutal. Last summer was a rough one and there were quite a few days where I could not really even function at all for a good portion of the day. So far this year with the last 2 weeks having many days with 90F+ degree temps, I’ve only had several short spurts of fatigue so for the time being that appears to have improved. I have also noticed that in general my heat intolerance has greatly dissipated, which is a very good thing since I live in a desert area and the summer gets very very hot.
But let’s talk spasticity. If you have MS, you most likely have spasticity in some way, shape or form. For those that do not know what spasticity is, you are lucky and should appreciate that. Most people with MS that deal with spasticity have it in their legs and back, it’s less common in the upper body, so the experts say, but really if you have MS you know that the so-called experts are usually wrong and don’t have a damn clue what they are talking about. Since these experts often say many things aren’t caused by MS, but those of us with MS know many types of pain are caused by MS and the experts are fucking idiots. But spasticity is when your muscles tighten up and contract and don’t want to loosen up again and it can also involve muscle spasms. So basically imagine having a bad leg cramp that just won’t go away for hours at a time, you can imagine how painful and annoying that can be or imagine your muscles spasming for hours at a time.
Now for the most part I’ve never had horrible spasticity, I’ve been lucky in that regards, I know many people who really battle it. But it does occasionally flare up in my neck and upper back where my muscles get super tight and will not go back to normal for long periods of time and then occasionally the neck muscles really spasm and it’s quite unpleasant. But when my spasticity acts up, if often causes my left jaw joint to become irritated and then that causes some pain, tingling and numbness in my jaw and left side of my face along with periodic headaches. But the tense neck muscles and spasming alone can cause some nice headaches as well. Usually for me it isn’t a constant symptom, it comes and goes and usually it isn’t super frequent. But the last couple days of this past week that has really been an issue for me and it’s the worst it has been. At one point in time my neck muscles were so tight and spasming so badly you could look at my neck and see it spasming, very unpleasant. And interestingly enough this only ever occurs on the left side of my neck and back, never the right side. But when I did have bad relapses that cause arm/leg weakness it’s way worse on my left side, and I know that is thanks to my nasty neck lesion in my c-spine. But the annoying thing this time around is that it felt like there was a lot of pressure and pain in my left ear. So in chatting with my hubby we decided that I should go to the Urgent Care and get it checked out to see if everything was caused by spasticity or if there was something else going on with that. Well when I went to Urgent Care I knew it wouldn’t be a good experience when I heard the name of the person that would be seeing me, I’ve dealt with this same person on several occasions and it’s like talking to a brick wall, seriously the gal never listens and blows me off, irritating…. I’ve encountered her once after being back when going there for a blood draw my first week home and she is not at all impressed about my procedure and often likes to state that everything is most likely tied to this dangerous experimental medical procedure I had done overseas. And it’s like, no you dumb broad, this is actually related to my MS and if you knew anything about MS you would know that, but whatever. So I explained my spasticity issues and everything related to that and then brought up that my ear hurt and felt like it had a lot of pressure there and was wondering if it could be infected, but she blew me off and said it was caused solely by spasticity and wouldn’t even look in my damn ear. But she said that she’d prescribe me muscle relaxers to help with the spasticity and my ear pain.. So she prescribed me the typical MS related med for that issue, Baclofen. So I figured that since the spasticity was bad, I would give those meds a shot to see if that was indeed causing my issues, and I will say even after the first dose that night it really did help loosen up my muscles, especially in my neck, I did feel much better the next morning. Just a note here, prior to this I had never taken any other med for anything related to MS other than Copaxone, so this medication was a completely new experience for me.
Now all that occurred on Monday, so when Tuesday morning rolled around I was feeling a bit better, my muscles were much looser and I took another dose of the Baclofen, prescribed to take 3 times a day at a low dose to start. But even with my muscles feeling better my ear was still not feeling better, still hurt and felt like there was pressure there. I mentioned all my symptoms to my hubby and he flat out said you have an ear infection. And when it comes to ear infections, my hubby is an expert, he has had frequent ear infections his entire life and deals with bad ones several times a year, so he knows that prompt medical care for that is important. Unfortunately for him when he has an ear infection it usually leads to his eardrums rupturing and all the fun stuff that goes along with that, his ears are screwed really, but all that is due to actual ear issues not being treated properly when he was a child, so he is doomed to ear infections and hearing loss. But because I know that with a compromised immune system infections are bad, I decided to call my doctor’s office to see if I could come in and get checked out. Now normally I would go to Urgent Care for this, but given my experience the day before, I figured it would be a lost cause to try and get my ear checked out because they wouldn’t even look in my ear before. Normally you get good care there, but that seems to depend on the person working. But anyways I left a message at my doctor’s office and explained that I didn’t want to go back to Urgent Care because I got blown off the day before and asked if he could see me as I knew it wouldn’t be a long appointment, and a couple of hours later I got a phone call back asking if I could come in at 2:00pm, which was in less than 45 minutes. Which worked for me as the doctor is only about a 10 minute drive away.
So at 2:00pm I went to my doctor’s office and got my ear checked out. He had the same NP trainee as my last visit there, a bonus I guess, got my ears looked at by 2 people. He looked in my left ear, the one with the pain, then looked in my right ear, then looked in my throat, felt up my neck, the usual stuff they do for an ear infection I guess. Then he had the NP trainee look in both my ears. Then he said I didn’t have a middle ear infection but my outer ear canal was inflamed. Then he explained all that to the NP trainee, showed her some pics on the computer, and then told me that I had an outer ear infection, also known as swimmer’s ear. Ironically I’ve done no swimming, my guess is that water has been getting in my ear because I have no hair and am not used to showering with no hair, so I doomed myself to get this outer ear infection. So he prescribed me some antibiotic/steroid ear drops that I have to stick in my ear 3 times a day, then leave my head tilted over for 5 minutes to let it get good and soaked in. The medication isn’t painful, but wow it is an odd feeling putting drops in your ears like that and the sensation you get when the solution is sitting in the ear doing it’s thing. I’m not experienced with ear infections at all, I recall having some as a child because of swimming in pools, but that was around 25 years ago….So I am way out of the loop on these things. But I’ve seen my hubby deal with these things frequently, so he often sticks drops in his ears so I knew what to expect with that, but usually his are bad and end up with the eardrum rupturing regardless of how early it is caught, so he’s normally on oral antibiotics as well, when he gets an ear infection, he knows how to get them good. So here’s a picture of that medication.
But back to me taking this Baclofen. So all meds have side effects…..When I took my second dose on Tuesday if made me feel really light-headed and dizzy, but it wasn’t too horrible, and afterwards I went to my doctor’s appointment for my ear afterwards, no big deal. About an hour before I went to bed that night I took my third dose for the day. And boy I had several bad side effects really hit me, shortly after popping that pill. I got really dizzy, light-headed, and started having really bad vertigo to the point I could barely stand upright. I also started having stomach cramps and my heart started racing. I laid down for the night and the room was really spinning and I felt horrible. All I could think at that moment is, fuck my life I do not want to deal with this extreme vertigo again. Luckily it wasn’t as extreme as when I had my first really bad relapse, I was able to move around and it didn’t come with nausea/dry heaving and after about 2 hours of laying there, the side effects subsided. But at that time I said fuck it, I am done with this medication, I will take the spasticity. If I continue to have issues with bad spasticity in my neck/upper back I will talk to my neuro at my appointment in 2 weeks and have him prescribe me something else. I could always try to Baclofen at a later date, but only if I really have to, I plan to avoid it….
So even though my goal was to avoid doctors till later this month, that failed. But hopefully I am done with doctors till my neuro appointment in 2 weeks. I guess unless these drops don’t help my ear, then I may have to go back to my own doctor and get something else. But minus the spasticity, I’ve been doing pretty good otherwise. Some of my old MS symptoms have visited me this past week, that is to be expected, but nothing super severe, which I am thankful for.
Now as for side-effects from the treatment itself and the chemo, nothing new to report. Really all I have happening right now because of that is hot flashes. They haven’t been as frequent this past week as they were before, so that is a plus. No bone pain to report either.
Improvements, well that has pretty much stayed the same as well. My vision is good and I have more feeling in my hands and feet then I did before, which is nice. But because some of my former MS symptoms are acting up periodically, my balance isn’t all too great and I do have some cog fog going on at times. But when those aren’t acting up, my balance is better than it was before and my brain seems to be much clearer. It’s all part of the roller coaster of recovery.
So what else has happened in this past week. Well I mentioned before that I was only going to take my anti-virals for a month like Dr. F recommends. But in reading up more in the HSCT veteran’s group and in chatting with people I decided to stay on them for 3 months. I know the time-frame varies from doctor to doctor, and I know some doctor’s don’t prescribe any at all and don’t think they are needed, but I figured 3 months seems to be what a lot of US hematologists recommend, so I am opting to stick on them for that time frame. I know they really don’t prevent shingles, so that isn’t my reasoning, but most hematologists say that at 3 months your immune system should be high enough that those meds won’t help after that point, so I’m going to stick with them for 3 months. My doctor here was fine prescribing me them for that time frame, so I got my first months supply just the other day, it’s a generic drug so really cheap after insurance. But sadly they are boring white pills here in the US, not like the fun blue circle pills from Russia.
Now when I picked up my prescription of my anti-virals (Acyclovir), the pharmacy gal was staring at me strangely and kept eyeing my crotch and I wasn’t sure what the hell was going on with her. She asked if I needed to talk to a pharmacist about these meds or if I had used them before, I said I was currently on them so I was fine not talking to a pharmacist, so she handed me the pills and I was on my way. But the whole time I was paying, everyone in the pharmacy was staring at me and some were giggling. I was wondering what the hell was going on with them. When I got to the car, I decided to read the information that came with my meds just to see what all they listed as side-effects for them, and the insert only discussed these pills being used to treat genital herpes…..It went into great detail about how they are used to treat genital herpes and how to practice safe sex even while taking these pills to not spread herpes to others. So I’m guessing everyone in the pharmacy assumed I have genital herpes, which I do not have….I never really researched this drug before so didn’t know what all it was used for, I know it’s a common anti-viral used everywhere after HSCT procedures and bone marrow transplants and also used to treat shingles, but did not know it was used for treating genital herpes as well.. So next time I pick up my prescription for that I am going to play this up and have some fun with it, ha! But apparently that is what happens when you get your prescriptions filled at Walmart, immature pharmacy techs, such is life I guess.
Now I always like to have some excitement during my week, so this week it was dealing with my neighbor’s cow. Now numerous times each year we deal with the neighbor’s cows getting out of the pasture and roaming through our property, so it’s really not a huge surprise, but this was a more interesting situation. So in the morning I was headed out the front door to go sit on the deck on the side of my house when I noticed cow prints in my garden by my tomato plants. Luckily the cow did not step on any of the plants. So I told my hubby and we wandered over by the pasture fence to figure out where the stupid thing got out at this time, I had a good idea, and I was right, it snapped one of the clips that was holding the barbed wire and snuck out between the wires, now this was a younger heifer so not quite a full-grown cow yet, so easier to escape fences. So there was some swearing about having to fix this fence yet again to keep the cow from getting out again, when we looked up at our goat pasture and seen a cow in there looking at us. Which wouldn’t be a surprising sight if we owned cows…..but we do not, we just own 2 goats. An older billy and a middle-aged fixed male. So then our first thought was how in the hell did a cow end up in our goat pasture, because the entire pasture is the mesh panel fencing with barbed wire on the top, so it’s escape proof for the goats. So then we had to make sure our goats were still in the pasture…which they were, they were chilling in their shelter in the shade, probably wondering why in the hell a cow was in their pasture. Now the cow itself was very confused, it just kept walking around the fence line of the entire pasture, most likely trying to figure out how to get out of this pasture. Earlier that day my neighbor moved his cows to his other pasture so this poor cow was all confused at where all it’s buddies were.
So now we have a cow in our pasture and had to figure out how it got in. So hubby looked around the fence and didn’t see any visible areas it could have gotten in where our pasture butts up against the cow pasture. Then I noticed a place where some of the wires were snapped where the wire mesh is connected to the barbed wire. It appears after the cow got done roaming my garden it couldn’t figure out where it needed to go to get back to the other cows and ended up pushing on the wire mesh and was able to get in our pasture that way. Only problem is how the wire mesh is there, it managed to push the mesh down to get in the pasture, but when it popped back up, it trapped the cow in and it couldn’t get back out the same way. Sigh…..now how to get it out without it destroying everything we own. Well first my hubby went up the road to talk to the neighbor about this predicament and while he did this me and the kiddos went by the goats and my oldest was feeding our old billy some grass through the fence. Now this goat is super friendly around humans, but apparently is not friendly towards cows, and the cow headed over to us as well to see what was going on, well my old goat, named Mangoat, thought the cow was headed towards his grass and he just rammed the cow right in the head and almost knocked the cow over, the cow staggered around for a bit before running across the pasture. Mangoat then walked back over and started eating the grass again. Needless to say the cow stayed far away from the goats after that, ha! Goes to show that a 200-250 pound 12+ year old goat can kick the ass of a 1000 pound cow. Don’t piss of my goat apparently… But after that whole incident the neighbor came down and we figured out a plan to get the cow back in the property pasture, we had to cut some wires on our fence to drop the wire mesh to manage to get it out of the pasture, and he did the same on the cattle pasture, it walked across our back yard/garden area and into the correct pasture. Now one may ask why we didn’t open the pasture gate and get it out that way, but then it would have most likely ran through my active garden area and destroyed things and we didn’t want that to happen. So after about 2 hours we managed to get the cow back where it belonged and have now learned that cow #25 is the problem cow we will most likely be dealing with again later this summer…. Some pics of Mangoat and the cow.
Then this week while doing some shopping we decided to humor my oldest kiddo and stopped by the Perrine Bridge to watch BASE jumpers. For those that don’t know, Perrine Bridge is the only bridge in the US where people can BASE jump for free 24-7, 365 days a year and does not require any permits at all. So it draws in BASE jumpers from all over the US and the world, and apparently now it’s so popular to watch that the tour buses full of foreign tourists now stop here so people can watch them jump. It’s really more entertaining for me to watch the tourists as opposed to the BASE jumpers themselves. But here’s some pics from that little trip.
So that was about the extent of my week, nothing all too crazy. Hoping next week is a bit more pain-free, but overall I’m feeling pretty good so I can’t complain too much. But on a parting note, here’s a picture of the sunset taken after some dry thunderstorms passed through.