Happy Fall To All
Greetings my fellow Sjoggie-Mates. I am long overdue for a SjoDry update. Many of you (who are in my local Pittsburgh Sjogren’s Support Group) are aware that I have taken a break from hosting the group for awhile. My head is willing, but my body just can’t at the moment.
I have spent the last 9 months getting my mom moved from Florida and settled in Pittsburgh. She has dementia and we had no family there. It became seriously evident that I needed to get her here so I could care for her..so that is mostly what I have been doing. I found a lovely senior community with all levels of care for her to live in. She is living independently but with much assistance from me. Nevermind, that my house looks like a riot happened there, with layers of dust on everything..it is what it is. She requires a great deal of assistance and I am now her caregiver. I am not complaining, it is a labor of love. I will, however admit to having a handful (or more) of ‘chewing the enamel off of my teeth’ moments..but that happens to all of us in various situations, caregiver or not.
I May Have Been AWOL..
I may have been awol for awhile, but guess what..my Sjogren’s has not been. Yes, SjoDry still has a raging case of this moisture-robbing illness whether I like it or not. These days, I am not taking the Plaquenil, not did I continue the Methotextrate. I only lasted a month on the Methotextrate before getting a respiratory illness that made me miss most of a week of work. I feared that further compromising an already very compromised immune system (CVID) might have that kind of impact on me, and indeed it did. I also experienced a fair amount of chest pain while on Methotextrate. Not sure why, but after thoroughly questioning whether the chest pain was just my imagination or not, it became apparent that it was not. So for now..I continue to experiment with various (currently legal) supplements. I am still on LDN which I continue to swear by & think that all people should take like they do their vitamins. Don’t ask me why..or I might launch into my LDN-praising rant. Btw, take a look at the story I submitted on the LDN Science site (LDN Family Affair). https://www.ldnscience.org/patients/patients-stories
I will admit that since I am not taking the Plaquenil, my pain has greatly increased. My decision to stop it was based on large chunks of hair I was losing daily and the cost of it. I require the brand version when I take Plaquenil and it had become a ridiculous cash outlay in which my insurance was of little assistance.
Medical Marijuana – To Take Or Not To Take
I certainly have enough pain, neuropathy and medical justification to qualify for taking medical marijuana, but I just can’t bring myself to that place yet. I feel like I should exhaust all avenues of pain control that I can. With that said, I have not had a great deal of relief from any of the CBD Oils or Kratom that I have experimented with. From my research on both products, I have learned that all strains and labs are not equal. Further, what works for one person (as with any med) may not work for another.
I am currently experimenting with Kratom. (Kray-tum). If you are asking what is kratom, I will refer you to Google. My understanding is that it is a supplement that comes from some type of coffee plant. Currently, it is legal in most states, though there are huge arguments about whether it should be made illegal. People against it, swear that it acts like an opiate and is addictive. People that are actually taking it, swear by it’s effectiveness at relieving pain. Those professional folks who work with Kratom explain that yes, it does work on the opiate receptors, but not in the same way that opiates do. I joined a FB group on all things Kratom for awhile. I read both the pro & against articles and find myself in the corner of the chronically ill patient who is plagued with tremendous amounts of daily pain. Biased FOR the use of Kratom..yes that is me and perhaps you also.
Unless you have lived this journey of constant pain and the limitations of chronic illness, don’t judge. I had a friend complaining of some significant pain and side effects from a brain tumor she has. I suggested that Kratom might be helpful to her. Within 30 mins. of my suggestion, 3 of her other FB friends attacked my suggestion as if I had made an offensive political comment. I am a person who does my research as thoroughly as possible, no matter what the topic might be. I have now tried 3 or 4 different brands/strains of Kratom (there are different strains and the red strain is supposed to be the most helpful with pain). Not once has any of these products elicited any type of euphoria or high feeling. To me, it is like taking an Excedrin and then happening to notice that your headache is greatly minimized or gone a few hours later. I have not felt any kind of craving or need to have more either after taking a single dosage or the next day. Has it made my pain go away completely? No. I have never taken any kind of pain control (opiates included) that have done that.
While on the FB group, I read several posts about previously opiate-addicted people who started Kratom and no longer take opiates. They literally praised Kratom as life-saving for them. I happen to think that there is a portion of our population who live with chronic illness and truly suffer real pain. If you fall into that segment with me, then I am sure that you too, have also experienced the treatment of being treated like a drug-seeker when only wanting some pain relief. I think it can be a lonely place and one almost feels shame at requiring pain control. Who gets to be the judge and jury regarding whose pain is worthy of being treated or not?
Uh oh…looks like SjoDry went on a little rant on the injustice of how we chronically ill people can sometimes (often) be treated. My intent was only to update you all on what kinds of treatments I am currently using to do battle with my Sjogren’s.
At the risk of repeating myself (which frequently happens), I think I also mentioned awhile back that I have been trying to meditate on a daily basis. I was sure that with my rapid-fire and racing thoughts, I would never be able to calm my little ole self down, but I am getting it folks. I do very well with most/all guided meditation and ‘okay..but improving’ when I just meditate without any assistance. It has definitely been a process for me to be able to learn to be quiet and go within myself. But what a fun vacation. It is a helpful way to escape our illness-filled human body. For that short period of time during meditation, you really can feel a relaxing freedom from everything. I highly recommend it if you have not tried it. You really don’t need a fancy class..just a set of ear phones & your favorite device that can get you to YouTube. There are so many F-R-E-E guided meditation videos to try on YouTube, you can do a different one every day/night.
More Happy Therapy
Another treatment I will begin taking soon, is my new role as first-time G-R-A-N-D-M-O-T-H-E-R! Yes, within a matter of 2-3 weeks, I will become a grandma and I am excited about that. I am told that it is very therapeutic to spoil one’s grandchild in every way possible. I feel that it is my joyful duty to find out. Babies are so much fun and my precious granddaughter (whose name I am not allowed to utter on social media yet) will be no exception. I began by helping to create a few things for the nursery. As many of you know, we own a small sign and graphics company, so we made a few artistic contributions (tree, quote & Woodland Masks) to the effort. Of course instead of going to Crate & Barrel & just buying the precious Woodland animal masks to match the nursery theme, I was sure that I could make them. (This is my recurring theme…oh I can make that). Nevermind that I have not made paper mache since grade school. Well..as I told my daughter, it was a labor of love, not skill sets!
So There It Is
Your SjoDry update..now working full-time in our business, playing the almost full-time role of caregiver, while starring in the role of the chronically ill & ‘in pain’ Sjoggie. I sincerely hope that you are all functioning at your best..whatever that may be. As I witness the changes that dementia has brought to my mom, I am grateful for the small and meaningful moments. Sometimes we get so caught up in our illness-filled lives that we don’t pay attention to some of those moments..but we do have them. Take time to appreciate those special moments. By that I mean that Sjogren’s can rob of us many things, but it cannot steal our joy unless we let it.
Take Care My Friends!