(I know it's been almost two months since my last post, but after several attempts to fix my computer failed, I had to get another one.)
I wrote the poem from the previous post, ( She's my auto-immune disease), at a time when I had no hope of ever getting better or ever feeling better. I had this illness and no one, not even my rheumatologist could put a name to it. Due to the fact that I had overlapping symptoms of several connective tissue diseases, ( lupus, rheumatoid arthritis and myositis), my rheumy described me as having an (UCVD) undifferentiated collagen vascular disease.
The following is an excerpt from a medical journal I was keeping. My medical journal chronicles the things I went through, the doctors I saw, the procedure I had before and after I was diagnosed with RA. It also expresses how hopeless, sad, frustrated and alone I felt during the process.
11/17/03- When I woke up this morning, my whole body was stiff. The bottom of my feet was aching a lot. As miserable as I felt, I managed to get dressed for work. I’m glad that I went to work, because around 3:00 pm, I started to feel better. Even though my body was still aching, I wasn’t as stiff as I had been this morning. I had some heart palpitations earlier at work, while I was on the computer. I took a Xanax and Wellbutrin, hoping the palpitations would stop.
12/11/03- My whole body was sore most of the day. I felt bad. I took two Tylenol Arthritis tabs and at bedtime I felt okay.
*8/17/04- Even though I was sedated, the muscle biopsy was painful. However it was not as painful as I thought it was going to be. The area on my thigh that was cut was extremely sore. I had no choice but to go right home and get into bed.
When the test result from the muscle biopsy came back several weeks later, my thigh was still throbbing some. Except for some type 2 fiber atrophy, the muscle biopsy was negative. (I had no idea what that meant and still don’t). I was very disappointed that the biopsy didn’t give any further insight as to what was going on with me.
10/2/04- My chest is killing me! It feels like asthma or something bronchial. I had difficulty breathing a couple of hours ago and I used my inhaler. I walked to Walgreen’s and on my way back, I was out of breath and had to use my inhaler again. I don't understand what's happening! I took 20 mg of prednisone at 8:35 pm and within a couple of hours I was breathing better. I still had some pain in chest. I took another 20 mg of prednisone at 9:20 pm. I'm going to use my nebulizer at 10:45 pm and if that doesn't work, I'm going to the hospital.
10/4/04-I’m in my MD’s office having an asthma attack. This is hard for me to believe, because I don’t feel like I’m having one. The doctor gave me a breathing treatment. And after she examined me by listening to my lungs, she diagnose me with having a condition called Pleurisy. She gave me a prescription for the pain and more steroids for the inflammation. I’m going to get on the computer when I get home to get more information on Pleurisy.
*Pleurisy which is sometimes called Pleuritis, is swelling (inflammation) of the thin layers of tissue (pleura) covering the lungs and the chest wall. (WEBMD)
1/14/05- My right upper shoulder and arms are still bothering me today. I’m going to take some Motrin and call for the result of my MRI on Wednesday.
MRI- Magnetic Resonance Imaging is a test that produces very clear pictures of the human body without the use of x-rays. It uses a large magnet, radio waves and a computer to produce these images.
The MRI result of my brain showed that I have a variant of a developmental Venous Angioma, with no increase risk of hemorrhage felt by the neurosurgeon. Dr. G. tried to assure me that the Venous Angioma wasn’t a bleeder and she also explained that the Venous Angioma would never give me headaches. Nonetheless, I’m still freaked out! I mean really, what the hell!
5/1/05-I had some breathing difficulties, chest heaviness and pain on 4/30/05. The body aches were probably due to the rainy weather. I took my med’s and looked in a medical book at Crossroads and saw that pleurisy can appeared on one side of the chest. Reading the medical book made me feel much better about having the pleurisy pain only on the right side. Today I was bothered slightly with chest heaviness, pain and breathing difficulties. I still don’t want to take the Methotrexate and I will fight taking it for now. I will tell my Rheumy about my visit to general practitioners.
My General Practitioner feels that my chest and breathing symptoms are related to my U.C.V.D. She thinks that I should get on the Methotrexate. She thinks the methotrexate will help. What do I do now? I had a chest x-ray, and it was negative, maybe
I am going to try to get a MRI of my right side. I got the results of my labs today. My Sed-rate was 30, not too bad.
12/3/05- I went to my GP on 11/30/05, because of the constant pleurisy pain. I had an x-ray of my chest. My GP said the x-ray looked crappy and since she felt there was a chance that I could have had pneumonia, she gave me Levaquin 500, even though I was taking Penicillin for a gum disease.
12/5/05-Today I am breathing better, the chest and pain in the middle of my back pain are still there. I'm taking Vicodin for that. I really think it's pleurisy. I've read that pleurisy doesn’t always show up on an x-ray. So maybe it is my UCVD or Pneumonia, who knows. My ankles have been swollen for two days now. I mean really what the hell?!
I’m hoping on the 9th, everything will turn out fine (pre-op). I’ve been resting more, even though I’m still working at drug rehab facility. As a matter of fact, I’m here now. I love it here. I know I’m making a difference in the lives of the women and that feels great! Med's-Plaquenil, Xanax, Wellbutrin, Prednisone 10mg, Mobic, Folic acid, Levaquin, Vicodin.
12/10/05-I’m at the drug rehab facility again today, still having some difficulty breathing. Mainly when I get up to walk the floor. The chest pain is always on the right side of my body. I’ve been taking Vicodin and Motrin for the back pain. I believe I am suffering from pleurisy again, but that is not my main concern today. My main concern is my lung function. I need to know for sure that my lungs are okay. I guess I’ll find out Monday from my medical doctor.
2/16/06-It’s been awhile. The surgery went well. My ovary is gone along with the grapefruit size cyst. Thank God, the oncologist didn’t find any cancer! The road to recovery was slow and extremely painful, but I made it and I’m here! As a matter of fact today is my first day back at the drug rehab facility. It’s nine pm, so far so good, I’m glad to be back with the girls.
I saw my Rheumy on the 7th of February and talked to her about my Pleurisy concerns and taking Prednisone. She put me back on Methotrexate (8) a week. I told her that being on 5-10 mg of Prednisone a day, I suffer little with the pleurisy pain.I told her that I would like to stick with those milligrams.
I still suffer with the sciatic nerve pain. Even though I take 5mg of Oxycodone for the sciatic nerve pain, I don't care for it. I don't like the way it makes me feel. you know jittery. My rheumatoid arthritis body pains are minimal today. I have noticed my asthma flaring when I’m out in the cold, cold weather. My sinuses are bothering me; I will go to see my G.P. before the week is out, if not tomorrow. My throat is becoming sore. I am going to make an appointment with the ENT doctor my problems. I feel like a hypochondriac!
I will see my pulmonary doctor on April 6th and my Rheumy on March 6th. I will talk to her then about getting physical therapy. Then I will make an appointment with the neurologist to see how the Carpal Tunnel is doing.
I’m hoping that when March comes around, I’ll be able to start walking at work on break time. By the summer I should have gone to all of the doctors above and then hopefully I can start working on my teeth and my weight. Med's- 5mg Prednisone, Wellbutrin, Xanax, Motrin, 2 Tylenols, Zyrtec, Folic Acid and Sinus med’s. When I go to the ENT doctor, I’m going to ask for a cat-scan on my ears, nose and throat. What the hell is going on!
2/25/06-I have definitely decided to call my Rheumy on Monday to see if I need a referral for Nero-surgeon or if that’s where I should go. I honestly thought that when the surgery was over, all my pain would be gone. I thought my lower back and leg pain were associated with the ovarian cyst. I was wrong! I’m back on pain medications. I’m constantly going to the bathroom to pee. either that's because of my diabetes or pressure on my sciatic nerve. This is crazy! If it’s not one thing, it’s another. I need to get the rest of my medical issues resolves, especially as far as work is concern!
My body pains are a little worse than usual and it’s probably because of the weather, but who knows. The first thing I need to do is to get my neck and back checked. Med's-Xanax, Wellbutrin, Folic Acid, 5mg Prednisone, Zyrtec, Motrin 600, 2 Tylenols, ½ Vicodin, Plaquenil.
3/11/06-I saw my Rheumy today about my lower back pain. I’m going to therapy on Monday. I have Arthritis in my neck. She gave me a prescription for muscle relaxers and a brace. My back is really hurting me today. I can’t get comfortable. My ankles are swelled and my legs are bothering me as well. The muscle relaxers help the neck pain but not the lower back pain. I will call her next week for another appointment. Xanax, Wellbutrin, Sudafed, Plaquenil, Folic Acid, Zyrtec, 5mg Prednisone, muscle relaxer (2) so far.
5/5/06- It’s been almost two months since I’ve written. I’ve been so achy and tired, both physically and mentally. All I want to do when I get home is to go to bed. Sounds sickening I know, but I don't care! As long as I make it to work, nothing much else matters.
I almost did 30 days off of steroids, but on 29 days I gave in. At least I tried. I knew eventually I would have to get back on them, because I was feeling worse and worse everyday. My muscles in my legs were hurting me so bad, that it I had a difficult time getting out of the bed and driving was worse. Finally I had to go see my Rheumy. There I was in her office crying as if I had gone mad! I thought I was finished with all of that drama! After she examined me, I told her what had been going on. After the examination, she gave me a slip to get some labs. She put me back on steroids and a new medication called Imuran. MEDICINE! MEDICINE! MEDICINE! I am so sick of this crap!
Things seem somewhat hopeless. I really don't know what to do. I am tired of all these doctors and I am tired of the pain! I started taking the prednisone and on Wednesday I started taking the Imuran. I do feel better today, but I know that is due to the prednisone. Once my legs start to feel a little better, I’m going to start walking on my break.
I got the labs results back. (urinalysis is good, sugar 134 high, sedimentation-rate 34, muscle enzymes 318, Lupus ANA negative, Lupus panels good, RH factor 20, ) that’s new because my RH factor has always been negative or below 14, which is normal.
Today my Rheumy told me to start taking 3 Imuran pills (50mg each) and 20 mg Prednisone. No more Methotrexate and Folic acid! Med's- Xanax, Wellbutrin, Zyrtec, Plaquenil (2), Flexeril (10 mg) at night Robaxin 750 mg (3 times a day) if needed. Flax Seed Oil (2) capsules and One a Day vitamins for women.
10-6-06-I had a lung cat-scan, and thank God, there wasn’t any pneumonia or fluids or blood clotting. The pleurisy as painful and uncomfortable as it is just has to ride itself out.
I’m on 40 mg of prednisone as of the 5th. I do feel better, especially when I’m walking. I’m not as out of breath as I was a couple of days ago. I’m taking Motrin and Tylenols along with Vicodin for pain. My pulmonary doctor referred me back to my Rheumy since my lungs are okay. I have an appointment with her on the 17th of this month.
Dr. H. my endocrinologist, has me taking Byetta injections (5mg), twice daily for my diabetes. It’s crazy, being that I am afraid of needles I now have to give myself daily injections. I go back to see Dr. H. on November 11th.
I’m going to get back in touch with my Neurologist, because I don’t think I should be experiencing so much lower back and leg pains if I don’t have a nerve condition. However, since I am on 40 mg of prednisone, I’ll give the prednisone a chance to work on that area of my body before I call the neurologist. At the same time I need to keep track of my symptoms. *The Pleurisy if nothing else, is very painful!!!!!!!!!!!!
In spite of not feeling so run down, I’m going to rest, rest, and rest!!!!!!! Prednisone 40 mg, Methotrexate (5), Zyrtec, Motrin 800x2, Tylenol (5), Tylenol with Codeine(1), Plaquenil, Xanax, Wellbutrin, Amaryl, Actos, Byetta x2. I have to make an appointment to get a mammogram, and then make an appointment with my gynecologist and eye doctor. I have an appointment with the Gastroenterologists, on the 11th of this month.
10/18/06-I saw my Rheumy yesterday. My cardio exam and the other that tests I took were negative. Thank God my heart is okay! I don’t need any other problems. I’m still having some minor breathing difficulties and pain due to the pleurisy. I have weaned myself down to 30mg of prednisone. Yesterday my Rheumy, told me to go down to 20 mg of prednisone. She also told me to do 15 minutes of walking exercise every day. She is going to set me up with some type of lung therapy. I don’t know what's going on!
I forgot to add from the last time that the cat-scan showed some minor scarring on my left lung. This could be due to the pleurisy or my past smoking or Sarcoidosis, not that I have Sarcoidosis, but it could be a possibility. My pulmonary doctor didn’t seem to be too impressed or concern, with the scarring. he said there is a large population of Americans with scar tissue on the lungs. That was good to hear. I just want to know with much certainty that my lungs are okay. After all there is a reason why I’m in pain and if it's not my lungs then what is it?!
My Rheumy told me to lose weight, while putting me on 7 Methotrexate pills a week. I have an appointment with her in a month. Med's- Xanax, Wellbutrin, Zyrtec, Plaquenil, Folic Acid, Prednisone 20mg, Amaryl, Motrin 800mg Ultram, One A Day Vitamin.
1/17/07 -I’m home from the hospital. I have an appointment with my Rheumy on the 19th. I ended up in the hospital when I went to the ER. My breathing, chest and back got so bad that the on call doctor from my rheumatologist practice decided to admit me. I was in so much pain, I felt like I had pneumonia. However the x-ray said I didn't have it, but that maybe I had bronchitis or something. I guess with my U.C.V.D, it's best to be safe, than sorry.
On my way up to my room, one of the nurses in the ER, who had been taking care of me, gave me an antibiotic ( I can't recall the name of it) and within seconds of taking that antibiotic I broke out in hives. I started itching all over really bad. She quickly gave me an injection of Benadryl and within minutes I was feeling much better and sleepy. And once in my room, that is exactly what I did, sleep.
I was optimistic about being admitted to the hospital. I felt like the doctors were finally going to find out what was going on with me. There would be a miracle drug for me and I would be fine. However, after 2 ½ days, the doctors knew nothing more. I wonder did they think it was all in my head.
On the morning I was to be discharged, one of the attending doctors’ suggested that I get a MRI of my chest. He said the MRI would should if there was any inflammation pressing on a bone or rib and that maybe that could be the reason for my pleuritic pain and shortness of breath. I was cool with that piece of medical advice and thanked him for it.
Once home I decided to take it easy. Especially when I noticed that if I talked or move around too much I got winded. I didn’t have to prove anything to anyone. I was sick! I canceled my eye appointment for tomorrow until next week when I feel better. Med's- Xanax, Wellbutrin, Plaquenil, Stool softener, 20 mg Prednisone, Actos, Folic acid.
1/19/07-I went to see my Rheumy today and nothing much has changed. I still have the back and chest pain and I’m still coughing. She took me off the Methotrexate, because there’s a possibility that the Methotrexate could be the culprit, because of its side effects. I’m on 15 mg of Prednisone and my other med’s. I get my MRI on Tuesday morning. I go to the eye doctor Monday at 10:15 am and my Endocrinologist on Wednesday at 10:15 am, I need to call my Rheumy to make another appointment with her in two weeks. I have an appointment with my pulmonary doctor on 26th at 1:45.
1/24/07-I think I found out what’s wrong with me in addition to the RA! “Costochondritis,” is an inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone or sternum. The condition causes localized chest pain that you can reproduce by pushing on the cartilage in the front of your ribcage. Costochondritis is a relatively harmless condition and usually goes away without treatment. The cause is usually unknown.(WEBMD)
I haven't gone back to work yet, I’m home on the internet reading about the symptoms of Costochondritis, I know I am making myself sick by constantly being on the internet, but I believe Costochondritis is what I have in addition to the RA and Asthma. I can't wait until I talk with my rheumy on the 16th of next month. I want to discuss the possibility of me having Costochondritis. I learn that it can also be chronic as well. I will be so happy if that's what I have, because then I will know what is causing my chess pains. However, before I celebrate, I need to find out the results of the MRI that I had done today. Med's-Byetta, Vicodin, Zyrtec and Flonase
*Costochondritis can improve within a few weeks and resolve completely within a few months, but then there are patients in whom this problem can persist for some time.
3/14/07- It has been some time since I wrote in here last. As I write in here today I am terribly tense and my entire body is sore! Believe it or not when I saw my Rheumy last month, she diagnosed me with Rheumatoid Arthritis. Which was great finally, but something still doesn't feel right. She decided to put me on Enbrel, a Biologic drug that I have to get approved by my insurance.
I started going to occupational therapy this week, so far it’s okay. I like it. This place specializes in Rheumatologic conditions, so maybe the weekly ultrasound treatments will work for the pain that I have in my chest.
3/25/07-I got approved for the Enbrel. It finally came in the mail on 3/23/07, my birthday! It took me awhile to give myself the shot. The needles are huge! I’m glad I only have to give myself a shot once a week. I’m extremely anxious to see if the Enbrel is going to work. I’m ready to go back to work! I need the money!
My pain hasn’t changed much since I found out that I had RA. It's still horrific! I don’t recall childbirth being so bad! If I had to explain the pain, wicked would be the word I would use.
Occupational therapy is still good! The treatment plan for the Costochondritis,(ultrasound treatment), I think might be working. I have an appointment with my rheumy next week. Hopefully by then I’ll see or feel some positive changes. Med's Xanax, Wellbutrin, Plaquenil, Actos
4/12/07- I need to make an appointment to see my gynecologist for my hot flashes (it’s a long story), but I read on the internet that there are several antidepressants that can help women with their hot flashes. I need to see my GP, because I need some anti-depressants for the hot flashes as well as for my mental state of mind. I am depressed and have been for awhile. I’ve been trying to deal with it, but I guess I need help! I am in so much pain both emotionally, mentally and physically and there is nothing that I can do about it. It's like what the hell! I don't need this crap!
8/21/07- I’m waiting to see the neurologist for the EMG test. Hopefully he’ll be able to tell me what’s wrong with my feet and hands. I can't remember the last time I felt any type of order in my body.
I can't believe this! I am a little late and now I can’t get take the test! How many times have I been on time and had to wait way over my appointment time to be seen?! These doctors get me sick!
It’s almost 1:00 pm and I’m waiting to see the podiatrist, I guess I’ll continue writing while I wait. From my neck down to my shoulders, back and hips, they are all throbbing with terrible pain. The pain in my back is right in the center, which is probably why I constantly feeling like I have pneumonia.
It’s strange that my thighs, buttocks, legs and feet aren’t bothering much today. My hands hurt as I journal, but I’m going to continue writing for awhile. I can’t wait until I get home, so I can lie down. Sometimes I think that when the doctors finally find out what's really wrong with me, it will be too late to fix it, then what?!?! I need an Xanax.
I need to get my prescriptions filled; my hands are really bothering me. I feel like a sick elderly person, whose body is deteriorating with age, not that I have personal knowledge of what that feels like. I am just venting.
Even though I am ill and still haven't been able to return to work, the decision to retire is not an easy one. But I have just about depleted my deferred compensation. My short term disability checks, aren't enough! The rent, gas, lights, food, car note and insurance are all behind. Then to make matters worse, I received a letter from social security this week and I was denied. I don’t know what I am going to do if I don’t get approve for the disability retirement. I am going to apply for social security again. I have nothing to lose.
10/24/07- It’s been a long time since I've written, but I’m so tired of living like this.
10/30/07-A list of medicines that can interact with Methotrexate- 1) anti-inflammatory, e.g. ibuprofen, 2) antibiotics, 3) Pepto-Bismol’s, 4) vaccines, 5) some diabetes medicines, 6) aspirin like medicines.
11/11/07 -My chest is killing me! Ever since Friday it’s been hurting really bad! At one point I thought about going to the ER, but changed my mind. I put two lidocaine patches on. I put one on my chest and one on my back. The only thing I guess I can do is to lay down. This is crazy!
7:30 pm my chest is still bothering me. I took some cough syrup, 2 Tylenol PM, Motrin 800, Neurontin, I can’t wait until the bone scan results come back. I need to make an apt to see the eye doctor soon.
11/16/07-My daughter took me to my appointment to the medical board in Hartford today. I was very nervous as I sat down to the table, but I think I did okay. I answered their questions honestly and elaborated on some. I believe my case will be approved, but then you never know. But I’ll know in four weeks.
12/27/07-Hands and toes are still hurting. Sugar is not high. My heart has been palpitating for a couple of days. I thought that maybe I had some anxiety going on so when I got home I took a Xanax and Lexapro. Hopefully the medication will help the palpitations. My body has been aching; my knees as well as the back of them have been killing me! My feet and ankles have been swollen. I will talk to my Rheumy tomorrow about taking Remicade.
2/20/08- Oh my God, it has really been a long time since I’ve written! I just been so damn depressed, I don't know what to do! This crap is crazy! Why do I hurt so bad! I don't have a life anymore!
I did try the Remicade, but am no longer on it. I’m on Humira. I had one full injection of Humira three weeks ago. As each day passes, I feel myself getting sick. I had a dreadful cold, with a fever and chills. I was feeling awful!
I know that Humira is another drug that lowers my ability to fight infection. I didn’t think I was going to be sick like I did. Then to top it off my chest pains and breathing problems had me feeling like I should have gone to the hospital. However, I was in too much pain and couldn’t get up.
I stayed in the bed and called my Rheumy the second week I was supposed to take Humira. I explained how sick I had been feeling. She told me not to stop taking the injection. She said to give it another week and call her if anything changed.
4/1/08- I don't feel like writing, sorry I am going to bed.
