I have been single since I fractured my spine in the beginning of October. I have not even ATTEMPTED a date since that time. At first it was due to the fact that I was fresh out of a relationship I hoped was going to work, and then it was because I was completely focused on my health.
I did not feel like myself, look like myself (thank you Cushing's Syndrome for the lovely moon face and belly), or have the desire to even TRY to put on an act for anyone. Once I stabilized on my "normal" dose prednisone (15 mg), I started to feel the shift in my personality, back to a more healthy sense of self. The weight from the Cushing's Syndrome is SLOWLY coming off...about a pound a week...I have about eight more pounds to go before I will be satisfied. So far so good, especially with my new diagnosis of hypothyroidism (which does make weight loss more difficult, especially around the mid-section). I also feel as if I do not have to put on a show for anyone, but can be myself...and flirting is fun again.
The scary part, for me, with meeting someone NEW is that the guy does not know the details and realities about my illness. I always explain that I have lupus, autonomic dysfunction, spinal fractures, etc...but dealing with the everyday symptoms of a chronic illness are difficult in the best of circumstances, when trying to cope with them while just learning about each other and trying to have FUN is a whole different ball game.
I am trying to take one day at a time and just go with it...hopefully I will finally meet the right guy...the one who can accept ALL of me...love ALL of me.
Wednesday, June 18, 2014
Tuesday, June 3, 2014
Fuzzy Head (and other symptoms) = Low Thyroid
So after months of tonic muscle spasms, headaches, throat spasms, chills, dry/itchy skin, depression, extreme exhaustion, weight issues (especially in the midsection), and a REALLY fuzzy mind (including stuttering at times), we finally figured out what is wrong...I have hypothyroidism. The thyroid has to work overtime to create the thyroid hormone (TSH) to try to keep up with the body's demands. Due to the overtime work of the thyroid, the TSH (thyroid stimulating hormone), is high.
This diagnosis was made when I went into the ER for stuttering. Of course, the doctors immediately thought I had a stroke, and I am incredibly thankful the doctor thought enough to run a thyroid panel along with all the other blood work. I did not have a stroke. With the headache, tonic spasms, and fuzzy mind along with the blood work, the diagnosis of hypothyroidism was made.
My rheumatologist started me on the most natural form of thyroid medication (and the oldest), Armour Thyroid. He started me on half the lowest dose, to make sure I did not have a reaction, since I am so sensitive to medications. Unfortunately, the new medication can take five weeks to START working. I feel a little better with the spasms, but the exhaustion, fuzzy mind, depression, and dry/itcy skin are still quite annoying! Also, a side effect of the medication is hair loss...for at least three months as the body adjusts. Sigh...yes, this seems to be one side effect I am experiencing. I have to keep reminding myself it is temporary.
I think the worst thing for me right now is the depression and fuzzy mind...although I am wondering which came first. I know that depression can CAUSE a fuzzy mind, and I know that a fuzzy mind can CAUSE depression...I have a feeling that in my case, the fuzzy mind is causing the depression. I am not used to "seeing through cobwebs". That is the best way to describe how I am thinking these days.
I have a thyroid ultrasound on Friday because my doctors noticed that it feels enlarged.
The only thing left to say is I hope as the medication starts to work, the days become brighter as I drag myself back from the edge of the darkness and try my best to see through the cobwebs.
This diagnosis was made when I went into the ER for stuttering. Of course, the doctors immediately thought I had a stroke, and I am incredibly thankful the doctor thought enough to run a thyroid panel along with all the other blood work. I did not have a stroke. With the headache, tonic spasms, and fuzzy mind along with the blood work, the diagnosis of hypothyroidism was made.
My rheumatologist started me on the most natural form of thyroid medication (and the oldest), Armour Thyroid. He started me on half the lowest dose, to make sure I did not have a reaction, since I am so sensitive to medications. Unfortunately, the new medication can take five weeks to START working. I feel a little better with the spasms, but the exhaustion, fuzzy mind, depression, and dry/itcy skin are still quite annoying! Also, a side effect of the medication is hair loss...for at least three months as the body adjusts. Sigh...yes, this seems to be one side effect I am experiencing. I have to keep reminding myself it is temporary.
I think the worst thing for me right now is the depression and fuzzy mind...although I am wondering which came first. I know that depression can CAUSE a fuzzy mind, and I know that a fuzzy mind can CAUSE depression...I have a feeling that in my case, the fuzzy mind is causing the depression. I am not used to "seeing through cobwebs". That is the best way to describe how I am thinking these days.
I have a thyroid ultrasound on Friday because my doctors noticed that it feels enlarged.
The only thing left to say is I hope as the medication starts to work, the days become brighter as I drag myself back from the edge of the darkness and try my best to see through the cobwebs.
Friday, May 9, 2014
Shrinkage
I knew the fractures in my spine caused me to lose some height, but I thought only a couple of inches from my already petite frame. I started out at only 4'11...now, after SEVEN vertebrea fractures, I am 4'6. I shrunk five inches. I never thought it was that much!
It is no wonder the prednisone weight seems so drastic even though I only weigh 105.5 now. I am losing about a pound per week, yet still look like I swallowed a beach ball, and now I know why. My torso is SO short now, which, truthfully makes my legs look MUCH longer. I do not really see that as a bad thing...although it does make finding clothes that fit properly a challenge, especially tops and dresses.
I do have to continually work on my posture, making sure I stand up straight, not hunching over...keeping my shoulders back and head up (my physical therapist calls it "walking like a supermodel"). That has helped dramatically, but I still have a long way to go...and I know I will never regain that height. I just have to deal with the fact that I shrunk. I shrunk five inches...sigh.
For all of you on prednisone, PLEASE, take some form of calcium and vitamin D to hopefully prevent spinal fractures and SHRINKAGE!
It is no wonder the prednisone weight seems so drastic even though I only weigh 105.5 now. I am losing about a pound per week, yet still look like I swallowed a beach ball, and now I know why. My torso is SO short now, which, truthfully makes my legs look MUCH longer. I do not really see that as a bad thing...although it does make finding clothes that fit properly a challenge, especially tops and dresses.
I do have to continually work on my posture, making sure I stand up straight, not hunching over...keeping my shoulders back and head up (my physical therapist calls it "walking like a supermodel"). That has helped dramatically, but I still have a long way to go...and I know I will never regain that height. I just have to deal with the fact that I shrunk. I shrunk five inches...sigh.
For all of you on prednisone, PLEASE, take some form of calcium and vitamin D to hopefully prevent spinal fractures and SHRINKAGE!
Tuesday, May 6, 2014
Takin the Ride to Facebook!
I decided to take this wild ride to Facebook I will, of course, still write here...so have no fear, this page is going nowhere! Here is the link to my new Facebook page, where I will be posting Lupus information, events in my area (and online), offering up support, and fun pictures :) Ivylfa My Lupus SeeSaw . I hope you will "like" my page and spread the lupus awareness and lupie/spoonie love!
Thank you so much for your support and for continuing to read about this crazy/wild ride I call Living with Lupus!
Thank you so much for your support and for continuing to read about this crazy/wild ride I call Living with Lupus!
Monday, May 5, 2014
I Did The Right Thing...
As much as it pains me, I gave up another piece of my independence. It almost seems fitting that this is happening during Lupus Awareness Month, as this is the root of my problems.
Today, as I was making my appointment to renew my driver's license, the online form asked two very specific questions: "Have you fainted or had dizzy spells in the last 12 months?" and "Do you have a disability that could impact your ability to drive?". Those two questions knocked the wind right out of my sails.
I never thought I would have to answer questions about my health when renewing my license...I ASSumed all I would have to do was show up with the required documents and get my picture taken for a new one. Never did I think I would have to answer "yes" to the above questions, which will effectively stop me from getting one of the last pieces of independence I have left.
No, I do not drive often...but when I am "well" for a length of time, it is always nice to know that I have the ability to get in the car and go. That will be taken away. More then likely I will only be able to get an ID card. Maybe if I can be "stable" for a good length of time one of my doctors will write a letter stating that I am well enough to drive again.
I know I could have lied...I could have easily checked the "no" box next to the fainting question and kept my ability to drive when I was able...but it just seemed too wrong to lie when asked a direct question about my health. I am not that person. Eventhough I threw myself a nice pity party, I still had to do the right thing.
I am not ashamed that I have lupus. I know that this is not something I did to myself...I do everything in my power to help myself get and stay as healthy as possible. I take my medications, do the physical therapy, keep looking for better treatments, and TRY to keep a positive outlook. This is just one more thing I have to overcome...at least I can say that I did the right thing. For that, I am proud.
Today, as I was making my appointment to renew my driver's license, the online form asked two very specific questions: "Have you fainted or had dizzy spells in the last 12 months?" and "Do you have a disability that could impact your ability to drive?". Those two questions knocked the wind right out of my sails.
I never thought I would have to answer questions about my health when renewing my license...I ASSumed all I would have to do was show up with the required documents and get my picture taken for a new one. Never did I think I would have to answer "yes" to the above questions, which will effectively stop me from getting one of the last pieces of independence I have left.
No, I do not drive often...but when I am "well" for a length of time, it is always nice to know that I have the ability to get in the car and go. That will be taken away. More then likely I will only be able to get an ID card. Maybe if I can be "stable" for a good length of time one of my doctors will write a letter stating that I am well enough to drive again.
I know I could have lied...I could have easily checked the "no" box next to the fainting question and kept my ability to drive when I was able...but it just seemed too wrong to lie when asked a direct question about my health. I am not that person. Eventhough I threw myself a nice pity party, I still had to do the right thing.
I am not ashamed that I have lupus. I know that this is not something I did to myself...I do everything in my power to help myself get and stay as healthy as possible. I take my medications, do the physical therapy, keep looking for better treatments, and TRY to keep a positive outlook. This is just one more thing I have to overcome...at least I can say that I did the right thing. For that, I am proud.
Thursday, February 27, 2014
The Good, The Bad, and The Oogly...Lowering Prednisone for (Hopefully) the Last Time!
Two days ago I lowered prednisone, from 20 mg to 15 mg. This will HOPEFULLY be my last drop. I know, I know...most people's goal is to get OFF prednisone, or at least much lower then 15 mg, but I have never lasted a long time on a lower dose then 15 mg. So that is my goal, to stay on 15 mg for as long as possible. I looked NORMAL on 15 mg...no Cushing's Disease, no extra fluid, no diabetis or glaucoma. I am now on Calcium Citrate and Vitamin D, so we are hopeful that my bones will continue to heal and get stronger. I also will probably start on a bone building drug once I stabilize on this dose, but that is a discussion for another time, and an issue I am not worrying about right now. One thing at a time!
Those were all the good things about lowering: last drop, no more Cushing's Disease, looking and feeling normal, not having to worry about diabetis or glaucoma, and being on a lower dose is better for my bones. Now for the bad part of dropping...the pain, insomnia, mood swings, nausea (and other stomach issues), fatigue, hair loss from the physical stress and change in hormone levels. I go through this for at least two weeks, though the stomach issues come and go for longer as I lose the Cushing's weight. It is one of the worst parts of dropping a dose of steroids, although I know I will like the outcome. It is no fun feeling like Kermit the Frog (It's not easy being green).
The oogly (and yes, I know that is not really a word, but I think it fits here, since ugly is not nearly strong enough to describe what I go through), parts of lowering prednisone for me include: migraine headaches. I get at least two during this process as my body adjusts to the dose. If it was JUST a migraine, which would be awful enough, it would go under the "bad" category, but no, my body cannot leave it at that...along with the migraine headache (which are called hemiplegic migraines because they occur on one side of the head and cause syncope, or fainting), I faint, get horrible muscle spasms down my neck/back/into my legs and literally curl my toes, and the worst part is that my throat and vocal cords spasm as well. There are even times when the spasms (including my throat spasming), happen when I am unconcious, and I "come to" choking. Those times are the scariest for both me and my parents (whichever parent is watching me at the time).
During these two weeks, since I never know when I am going to faint or get a migraine headache, I am rarely left alone. If I am left, it is either on the couch or in bed. I know not to get up without anyone here, as falling, which has happened before, would be devasting for my back or worst, if I hit my head. I cannot afford to fracture anymore bones. I will be super careful when I walk without my brace now, and will be using my lower to the ground hospital bed for the next two weeks.
So like I said, lowering prednisone has its good, bad, and oogly parts...but it is a necessity to get to, and remain at 15 mg. Well, I am on 15 mg now and plan on staying here through all the misery the next two weeks will hold because I can see the light, though it is still in the distance, at the end of this VERY long tunnel! That is what gives me the will power to see this through...knowing I am done...knowing I can breathe a sigh of relief after only two weeks of hell. I can get through this, like I got through all the previous drops. That is my mantra for the next two weeks...I can get through this!
Those were all the good things about lowering: last drop, no more Cushing's Disease, looking and feeling normal, not having to worry about diabetis or glaucoma, and being on a lower dose is better for my bones. Now for the bad part of dropping...the pain, insomnia, mood swings, nausea (and other stomach issues), fatigue, hair loss from the physical stress and change in hormone levels. I go through this for at least two weeks, though the stomach issues come and go for longer as I lose the Cushing's weight. It is one of the worst parts of dropping a dose of steroids, although I know I will like the outcome. It is no fun feeling like Kermit the Frog (It's not easy being green).
The oogly (and yes, I know that is not really a word, but I think it fits here, since ugly is not nearly strong enough to describe what I go through), parts of lowering prednisone for me include: migraine headaches. I get at least two during this process as my body adjusts to the dose. If it was JUST a migraine, which would be awful enough, it would go under the "bad" category, but no, my body cannot leave it at that...along with the migraine headache (which are called hemiplegic migraines because they occur on one side of the head and cause syncope, or fainting), I faint, get horrible muscle spasms down my neck/back/into my legs and literally curl my toes, and the worst part is that my throat and vocal cords spasm as well. There are even times when the spasms (including my throat spasming), happen when I am unconcious, and I "come to" choking. Those times are the scariest for both me and my parents (whichever parent is watching me at the time).
During these two weeks, since I never know when I am going to faint or get a migraine headache, I am rarely left alone. If I am left, it is either on the couch or in bed. I know not to get up without anyone here, as falling, which has happened before, would be devasting for my back or worst, if I hit my head. I cannot afford to fracture anymore bones. I will be super careful when I walk without my brace now, and will be using my lower to the ground hospital bed for the next two weeks.
So like I said, lowering prednisone has its good, bad, and oogly parts...but it is a necessity to get to, and remain at 15 mg. Well, I am on 15 mg now and plan on staying here through all the misery the next two weeks will hold because I can see the light, though it is still in the distance, at the end of this VERY long tunnel! That is what gives me the will power to see this through...knowing I am done...knowing I can breathe a sigh of relief after only two weeks of hell. I can get through this, like I got through all the previous drops. That is my mantra for the next two weeks...I can get through this!
Friday, February 21, 2014
Moving Forward...Different Meanings for Different People
I have come to realize that the term "moving forward" means different things to different people. For me, moving forward doesn't mean moving forward with a career path YET. I emphasized yet because although it does not mean that for me right now, I am hopeful that it will in the future. Right now, though, like so many with chronic illness, moving forward means taking pride in the victories many people cannot see.
Just this past week I moved forward by being able to take my back brace off during parts of the day and night. I also was able to shower myself, which, up to this point, since fracturing my spine, I have not been able to do. It also meant that I was strong enough to, each day, get my own lunch, snacks, and refill my drink.
I did have a flare up of my lupus symptoms this week after spending all morning in the sun on the weekend after taking my parents to Butterfly World as their Valentine's Day present. Although this knocked me back for a few days, we all had a wonderful time that day, and I do not regret going. Some things are just worth it...and the beauty that surrounded us that day was one of those things. I was even able to stand to take some pictures...I viewed that as moving forward, as well. I even came to realize how much I enjoy taking photographs of animals...something to think about, and maybe research as my healing progresses.
I also started writing my book again...a fantasy/romance novel. It is definitely for adults, super creative, and has nothing to do with illness, which makes it perfect for me as a form of escapism. I consider that moving forward, too. Although I do not write while I have a migraine, for obvious reasons, I was pleased that the ideas did not stop, so today I started writing again. Only a few days break this time. I write in short bursts, but the words just flow out in that time as if they were stored up and just had to be put down somewhere until there were none left. Again, I consider that moving forward.
Other people would see these things as trivial...or not enough. I see them as strides in the right direction. After all, Rome wasn't built in a day, and my body will not heal in one either. Until it does, I will take pride in each and every step I am able make that puts me one step closer to health. Yes, there will be set-backs, but that is the nature of the beast with auto-immune diseases, but if I can get myself back up to take those little steps forward again, I know I can continue to move forward to whatever destination I choose for myself.
Just this past week I moved forward by being able to take my back brace off during parts of the day and night. I also was able to shower myself, which, up to this point, since fracturing my spine, I have not been able to do. It also meant that I was strong enough to, each day, get my own lunch, snacks, and refill my drink.
I did have a flare up of my lupus symptoms this week after spending all morning in the sun on the weekend after taking my parents to Butterfly World as their Valentine's Day present. Although this knocked me back for a few days, we all had a wonderful time that day, and I do not regret going. Some things are just worth it...and the beauty that surrounded us that day was one of those things. I was even able to stand to take some pictures...I viewed that as moving forward, as well. I even came to realize how much I enjoy taking photographs of animals...something to think about, and maybe research as my healing progresses.
I also started writing my book again...a fantasy/romance novel. It is definitely for adults, super creative, and has nothing to do with illness, which makes it perfect for me as a form of escapism. I consider that moving forward, too. Although I do not write while I have a migraine, for obvious reasons, I was pleased that the ideas did not stop, so today I started writing again. Only a few days break this time. I write in short bursts, but the words just flow out in that time as if they were stored up and just had to be put down somewhere until there were none left. Again, I consider that moving forward.
Other people would see these things as trivial...or not enough. I see them as strides in the right direction. After all, Rome wasn't built in a day, and my body will not heal in one either. Until it does, I will take pride in each and every step I am able make that puts me one step closer to health. Yes, there will be set-backs, but that is the nature of the beast with auto-immune diseases, but if I can get myself back up to take those little steps forward again, I know I can continue to move forward to whatever destination I choose for myself.
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