First I wanted to apologize for taking so long to write. It's been a whirlwind of changes as you will see towards the end of this posting.
Over the years all of us have had to make some type of concession to deal with our diseases. I will share some of my concessions I have made over the last 35+ years to my multiple diseases and disorders.
What changes have you made? (you can share or just think back and take note for yourself).
To be honest I do not remember life with out pain, swelling, some type of brace or contraption to attach to my body, or doctor visits. My Mom still tells me how I would start screaming as soon as I saw the doctor because I knew I was getting another injection. (These were above and beyond the standard USA vaccinations).
I was born with several birth defects that required correcting so I will start there. I have what is now known as Klippel Feil Syndrome, even though mine is mild it still has required concessions. Especially when I was a teenager when they determined I had Scoliosis which is actually part of Klippel Feil though we didn't find out until much later. I was also born with what they call Bilateral Hip Displasia where both of my legs were outside of the hip sockets, my feet were pointed into each other (Pigeon toed feet). I had Dermoid Cysts with hair growing out of them in both eyes and a tumor on my left ear. Now remember this is ALL BEFORE I was ever diagnosed with Juvenile Arthritis when I was 13 years old.
The concessions I have had to go through (or my mom made for me since I was an infant). I was taken to an orthopedic doctor who was able to pop both legs back into their sockets but I had to wear a 16" bar between both feet for 23 hours per day! If you ever heard my grandmother ask my mom to take the bar off because she couldn't sleep with me banging them all night long against the crib! She also didn't want to see her second granddaughter go through it. If she only knew what we all deal with now, bless her soul. At the same time since this bar had to be attached on the bottom of shoes between both feet, I had to wear shoes 23 hours a day with special attachments on the bottom. Now, when children are born with this defect they use a different type of diaper shaped hip brace. If anyone wants to see this contraption I can get you a picture of it..since I still have and in 1962 it cost 15.00 which was expensive per my Sports Medicine Doctor.
So I got to wear this bar for two years and my brother would drag me across the hardwood floors by it. He did love me we made it fun for both of us. I ruined my mom's hardwood floors by standing up with the bar and dug the bolts on the bottom into the floor and scratched the living heck out of them. (Years later my husband and I redid their floors so I had finally made payment on that destruction, and it cost me a pretty penny and time to fix! Stash is a saint for marrying me and helping me through everything.) I even used to dance with my cousin with them on we have old films of this and it was hilarious to see.
When I was 2 years old I had my first surgery, where they removed the tumor that was growing on the outside of my face into my ear! Yes I have slight hearing loss in that ear but it's manageable, unless you ask my husband who said I put the TV up to loud. Though the Doctors have tested my hearing and said that i don't need a hearing aid I need better acoustics to hear correctly. I don't get it, but it is what it is!
When I was 5 years old is when I had to be the Blind Man while playing Blind man's bluff; I cried that my cousins made me be the blind man. Okay first I'll let you in on the story. My Paternal Grandmother was blind for over 40 years and I used to practice being her all the time. It was fun to go to her house and not say a word and let her feel our face so she could tell us who we were and give us a quarter. Well, when it was time for this particular day of blind man's bluff I had just gone through my second major surgery where they removed the dermoid cysts from both of my eyes. So I had to be the blind man because I had patches on both eyes! It is amazing how we remember certain things because I am now 49 years old and I can remember who was in that hospital room with me to this day and where they all stood. I can remember my paternal grandmother crying when they took that patches off and I could still see. This was an accomplishment since I was the second person in the USA to be born with these cysts in the EYES and the FIRST to have them removed with out losing their sight! Yes I am in the medical books since the doctor wrote a paper on it, after he lied to my mother by telling her he had performed this surgery before. He had only observed his father perform the first one and it failed. (If that was now day's I'd be rich for some type of law suit; I'm sure.)
The concessions I made for my eyes while going to school after the surgery (because get this the public school wouldn't admit me to normal school if my mom didn't have them fixed, or they would have sent me to the school for the blind even though I wasn't blind. )
When I was in elementary school the kids would tease me because I have these white spots in my eyes. I was reported to the principle because I got so upset about being teased, one day I told the kids that a mouse took a bite out of my eyes. The principle called my mom told her I was making up lies and upsetting the other kids. (Now days they would have been considered bulling me...you would think.)
Well, all I have to say is that over my younger adult years my eyes were always the attention getter from those of the opposite sex and it was a conversation starter. Just this year a High school class mate that I had befriended on Facebook made one of the most refreshing comments to me about being the girl with the most gorgeous brown eyes! Boy he made this old girl blush!
During this time, I have been wearing corrective shoes to fix my inward pointing feet (pigeon toes). Where when it came to Halloween I was always guessed because of my feet!! That made me so upset. Now, every time I see my mom's "friend" I remember how he used to guess who I was. Yes my mom is dating her neighbor now that His wife and my dad both passed away 6 years ago. Go Mom!! (80 years old and dating).
At the age of 9 when trying on some clothes my mom kept yelling at me to stand up straight because the dresses weren't fitting correctly on the one side. I was standing straight she then tried to get the back of the dress to lay flat and she realized that my right shoulder blade was protruding a lot! So off to Alfred I. Dupont Institute for Children in Delaware we went. They confirmed that I had Scoliosis with a 27 degree curvature and would need to be measured for a body brace. My mom wanted me to be able to adapt to having to be teased and continue to go to school with this awful body brace, she agreed to put a window unit air conditioner in the window and a above ground pool in. So I kept going for a years for measurements and growing spurts etc. Only to find out I wouldn't have to wear the brace when I was 13 because I was DONE growing. Yes I am still the same height I was when I was 13 years old. Too bad I'm not as skinny anymore! So here I am now 49 years old with size 4 1/2 - 5 foot and only 5' 0" if I continue to go to the chiropractor to keep the curvature from going further to the right! Woohoo no brace escaped that embarrassing item for Junior and High School, shucks had to give up the air conditioning and the pool too!
During this time I wasn't sharing with my parents the pain I had every morning waking up, or the swelling of my knees, feet and hands. All in fear my mom would take me to yet another doctor. By this time I have had enough x-ray's that I thought I would glow in the dark. Well, I tried to hide it from her until my knees were in such bad shape I would just fall down, most of the times when walking down the stairs. This is when she took me to the family doctor (we didn't have pediatricians then, shit the doctors still made house calls! Now that is called Concierges Medicine). He said it was growing pains and sent me for an x-ray, the results were unremarkable. After another year of this and falling at school Mom dragged me back to AI Dupont in Delaware again. This is where things started getting ugly where my knees and hands were bright red and swollen almost all day long. They did their x-rays and blood tests and WAM!! You have JRA Lucky me... They put me on all kinds of meds which weren't working. I know this because to this day I still remember when I couldn't walk because my knees and feet were so swollen my brother would carry me up and down the steps to use the facilities. Now that's embarrassing. Those Gold Shots used to HURT!!! Not sure how I survived it at such a young age, but it is what it is.
The doctors proceeded to explain to us that eventually I would be in a wheel chair and that I was not allowed to be in the Marching Band (I played the reed instruments such as Sax and Clarinet), I wasn't allowed to participate in any sports unless it was swimming or bike riding. Two things I am not good at. When I was in School in the music program you weren't allowed to be in Orchestra without being in the Marching band no matter what, not even medical reasons. (get this I was never allowed to speak Italian at school either; now my grandson is forced to take Spanish since kindergarten, what gives here?)
I hid the fact from most of my friends that I had this Rheumatoid Arthritis in fear of being teased and/or people thinking it was contagious not to mention I didn't need anymore issues at such a young age. Me coming from a very old fashion Italian family all I could think was no man will ever want to marry me as broken as I am. (don't judge me but I have had three husbands, Stash being my 3rd and a god send; oh yea we divorced once and remarried a few years later..)
Well when I was 18 they finally told me that I still couldn't run or put any undue impact onto my knees, hips and feet/ankles. Yea right do any of you believe I stood by and just gave up? Hell, no I decided 35+ years ago that RA was in my body but I controlled it, not it me!
So when I went and did everything they told me not too. I stopped my meds, I started being a person of my age. I bought a car with a 4 speed and a clutch. I drank what I wanted too, went out late at night. When I was 20 years old, my mom brought home a guy for me to meet and a year later we were married. Since by this time I did start meds again I was having stomach issues, so after a upper endoscopy I was informed of the holes in the lining of my stomach that would eventually develop into ulcers and I had to stay away from spicy foods for the rest of my life. BTW I am 23 years old at the time. I have had 2 miscarriages by now. So once again I went off all my meds, drank, smoked and 1st hubby and I decided to become Ballroom dancers. So I did, I danced for 7 years, was in the best health of my entire life. I foxtrotted, jitterbugged, tango'd, waltz, rumba and cha'cha'd my heart out. During this entire time there were very few flares and I loved it. I thought I beat the disease..
oh to my surprise!
As the years went by I have had several more miscarriages one at 6 1/2 months not sure if they classified it as miscarriage or stillborn, needless to say still I was in my early 30's and childless. A few years later I met my current hubby and his three children. We were a happy family until once again I couldn't get pregnant so the OB/GYN prescribes Clomid for me to take for a month. Yea well it worked it pushed as much blood to my female organs than they could handle. So on Passover I was rushed to the hospital with profuse bleeding and doubled over in Pain. They ruled it to the fertility meds and thought I was having another miscarriage. Well I decided to switch doctors and not just use the one my Mom had me start with years before. The new doc did some internal exams and tests gee what a concept!! He found Severe Adenomyosis, endometriosis, fibroid tumors! So as upset as I am about being 35/36 and never giving birth I went home to my husband and we discussed our options. At the time my daughter was pregnant with our first grandchild. (Stash has three children from his first marriage that all lived with us at the time. I have come to call these children MY KIDS. They are part of my life and always will be. Their kids are my grand-kids and we do not see nor recognize any lines of STEP anything in our family.) Okay well back to the GYN concession so after a few more months of painful cycles and intercourse which I would cry during and by the time we were done my husband hated himself, we decided it was time to do the unavoidable hysterectomy. I scheduled a consultation with Dr. D as we call him (long Italian last name). Dr. D, explains how he will give me a bikini cut and "Oh no your not Doc, between the scars in my eyes, the one on the side of my face, oh and the ones down my back from the removal of per-cancerous moles no more scars. (oh thee of little knowledge I have so many more now!). I negotiated with him how he could preform a vaginal hysterectomy while still getting the entire clump of what ever was in me out. So he went in optically through the belly button and both sides over the ovaries, did some snipping and wam bam thank you ma'am. I was done and out of work for 8 weeks.
Thought I was done with scars, since you can't even see the scars from the hysterectomy I was thrilled. Along comes this wonderful nodule on my wrist. Right under the pad of my palm in on the pinky side of the hand. Well almost over night it grows and it becomes extremely painful I can't even write my signature or type with out my wrist hurting if you touch it. I had gone for several cortisone shots in it; don't ask the doctor where I kicked him at the first time. He will never stand in front of me again! These shots don't work so he has to go and cut it out. This was a same day procedure and needless to say I was out of work again for another 8 - 12 weeks after. Boy I was so misinformed about surgeries and what to feel like after.
Somewhere in my mind I always seem to convince myself that after the surgery it will all be great and I will jump right back into life. I am hardheaded sometimes you would think I would have learned by now!
Please note during all this time, my grandmother is dying from colon cancer, my middle son goes through liver failure and we are told he had 12 to 24 hours to live without a liver transplant, my grandson is born, we have to help recover the family business.
You would think that this would be enough for one person right! WRONG I get more! Is it true God only gives you what you can handle and not anymore? Or is it that God tests us to see how and when we will crack? (Okay I go with the first but, some go with the later.)
I caught a break for about 6 years with very little flares and only a few drug trials for new RA Meds. By this time I have had who knows how many packs of steroids laying around the house. Not to mention the different pain meds to knock out a horse or a herd of them! During this time I go through a divorce from Stash (don't panic we get back together). I start traveling every week on an airplane for the company. I wind up with two torn rotators cuffs and one turns into Frozen Shoulder and I have to go through a Right Shoulder Manipulation under anesthesia. Basically what they do is put you under so they can rip your arm back out of its locked position and inject you with all kinds of corticosteroids. Yea I thought I'll be okay after right. WRONG again. This was more painful then the hysterectomy. I couldn't even move my fingers. Of course I went through Physical Therapy for 12 weeks after this too.
Back to the travel schedule for work: I leave on a Sunday come home on Friday's do laundry and leave again. I adopted a MaineCoon cat that is a big as a small dog, he is my love at this point. I do this for the company for about 4 years and then my father gets diagnosed with Pancreatic cancer, I stop and take 12 weeks of FMLA (Family Medical Leave Act). I help him and watch him die in my living room.
During the 8 1/2 weeks I was taking care of my father I didn't realize part of my body was failing me. One night out of the blue I came down the steps and looked at my dad in his hospital bed and my mom on the sofa next to him and told them to call 911! So my mom called my Aunt! (You thought she would have called 911 right, no not my mom, she called my Aunt to hurry up and come over that I was having a heart attack, to which I thought I was. Thank goodness I left the back sliding door open because my neighbors called 911 when they heard my mom say heart attack and me yelling at her to call 911 again!
Well the paramedics come and they put me on their gurney to take me to the hospital; my dying father gets out of his bed and is walking behind us with his walker telling my mother he is going with me. I finally was able to tell him to stay and I would call him so they let me take my cell phone. I went through the typical EKG's etc etc.. They did an ultra sound and said that I had Gallstones and that I had to have emergency gallbladder surgery! I said NO WAY I have a dying cancer patient at home and I was his primary medical care giver. My Mom had shut down the day he was diagnosed and Daddy didn't trust anyone to give him his pain meds, and his twice daily injections for blood thinning and to monitor and adjust his insulin according to the levels of his readings. This was home hospice care that I was providing for him so he didn't have to die in a hospital. So I told them I was leaving and I DID!! The next day or two I rested and went to our primary doctor Dr. Justin; which my dad and I never called Doctor we called him Justin because he was a friend of ours. My Mom to this day Calls him Dr. XXXX not even by his first name. Can't change somethings its the wisdom to know the difference of what/whom you can and cannot change as the prayer says. Well, Dr. Justin and the Gastroenterologist that he discussed my case with ruled out gallbladder, because there was only ONE stone that wasn't even lodged so they determined it was ANXIETY Attacks. Do you think it could be anxiety. Here I am 42 years old taking care of a 75 year old that is dying from Pancreatic cancer and a mother that is just numb from the idea that her husband of 53 years is going to die. All the while everyone and their brothers are telling me how to handle my father and changing his diet etc etc. They gave the man less than 90 days and they wanted me to worry about his diet... I am the typical Daddy's little girl / Italian Princess you would ever want to know when it came time to my Dad! My entire adult life I spoiled my father he and I were drinking buddies, dancing partners at weddings, we sang in Choir at church together for years, we sang in our living room for years. So I did what my dad wanted I gave him QUALITY of LIFE at the end not quantity. During all this of course my muscles ached, my joints hurt but I kept going because that's what i do, been doing it for years as you can see.
The time comes and my dad passes away, I finally sat down and cried ALONE. The next day I woke up to one of the most nasty flares I had, had in a long long time. I popped my pain meds and proceeded to make all the final arrangements for my Dad. He died on Sept 7th and was buried on Sept 11. The priest gave us the church for the entire day because no one wanted to be married on that day who would after 9/11/01. My Dad was a Korean Vet so it was fitting and we had the church and all his flowers done in Yellow. So Fitting. This was a time that changed my life and started the RA Flares that changed my life and I believe that Stress is a big key to what brought my RA out of remission.
At the funeral after they handed my mom the flag and she of course handed it to me since I am the patriot in the family. We all had Yellow Roses to put on the casket, when it was my turn (the second person) I had a hard time standing because i got so stiff for sitting for so long. I finally got up, waddled to the casket and as I walked away i could feel my knees buckle. The only one out of 100+ people at the services noticed this and it was my at the time Ex-Hubby Stash. He abruptly ran over and caught me and helped me to the car. He noticed my hands being swollen and told me I needed to take care of myself and to get to a Rheumatologist again. Of course I ignored his advice because I wasn't giving into the disease again. So I made an appointment with Dr. Justin, he put me on my RA Meds and some of the Osteo meds...Bextra was my new wonder drug! Along with Packets of Steroids once again.
I finally go back to work on my travel schedule and couldn't continue doing it, so I took a position working from home. After two years working from home and working 80 to 120 hours per week. Both my elbows were killing me along with the rest of my joints but I kept going. By this time I have been seeing a new Rheumy in a new town, since we moved to another state. I was reintroduced to Enbrel and Celebrex, because Bextra was taken off the market. So these are my new wonder drugs (not to mention the MTX Methotrexate oral).
It comes to the point I can not tolerate the elbows any longer and go to the Orthopedic (sports medicine doctor) aka. Dr. C. He believes I have tennis elbow in both elbows and the right one is worse than the left. He sent me to Occupational Therapy for both and after 12 weeks the left one was 'Okay" the Right one not too good at all. So we discuss surgery, I arrange with work to take medical leave and of course during this time Dr. C is aware that I have RA. He understands RA because his Aunt has it and we have discussed the treatments and the group I started locally. He had my pamphlets in his lobby and has given them to his patients. Surgery goes well, healing not so well. Yes I wind up with a fever afterwards again. Now I have a scar that is about 5 to 10 inches long on my elbow. During my followup visit Dr C proceeds to tell me he had to scrap out my elbow because all the fluids were a GREY MUSH and he proceeded to tell me how I am not a normal person. This is an outstanding thing with he and I...He says he is just the Carpenter and Dr. B (Rheumy) is the real doctor, and that I am coo-coo. Which My hubby decided was a diagnosis of me being Crazy.
Did I mention during this time, my daughter got married, I sold my house, my daughter got pregnant again and I am in a full arm sling when my granddaughter is born and I can't hold her!! The average healing time is 6 - 8 weeks for Tennis Elbow surgery so me and the nurse from my company had differences on why Dr. C and Dr. B want me out an additional 4 weeks. I had to tell her I had RA which now goes on record and I am no longer entitled to 66 3/4 of Disability insurance because of a pre-exisiting condition. Which I think is no big deal since I am now 45 and I am still walking so I'm good. A year goes by and I have tremendous muscle pain all over; my RA is getting worse and the Enbrel isn't working since I was off of it for 4 weeks for the surgery. So we switch me to Orencia. It starts working well at first then a few months later I am so tired and still so swollen and having other symptoms of fatigue and unexplained pain. So my doctor does a Lyme disease test...Yes it is positive so she runs it again, still positive. So off the Orencia I go and 30 days of antibiotics and that treatment. During this time my left elbow starts to bother me once again. So back to Dr. C; yes this time we skip the 12 weeks of PT and go right for the surgery. So we schedule it around my Orencia treatments and work with Dr. B (For the Record Yes My Rheumy's name does begin with a B and the Ortho's does begin with a C.. So I am not bullshitting you here!!) I go through the same ordeal of tennis elbow which really isn't as Dr. C explains but as he said there is no real diagnosis for what is going on with my soft tissues in my arms and fluids. I go through PT and go back to work yes 12 weeks later!! This time no issues with the Nurses.
I am enjoying my life even though I still have flares and have switched from MTX Oral to Injections. I am having more and more issues walking, having more issues with Orencia not working. Though at this time I wind up back in the hospital again because of chest pains only to find out I do have Gallbladder issues, I go to the surgeon and we schedule gallbladder surgery... When he comes out he tells Hubby that the gallbladder was so dense that the ultra sounds I have been having weren't showing the amount of stones I had, here my gallbladder was close to being sepsis and could have ruptured. During my recover my RA gets worse, I wind up with more issues and the Rheumy puts additional time on my Short Term Disability so I was out for 26 weeks in total and at the end of it all. I had to go on Long term disability and the Rheumy is not allowing me to go back to work. By this time I have a diagnosis of RA (which I started with) Fibro, Lyme disease and Degenerative Disc disease in my cervical spine (this is contributed to both the Klippel Feil and the RA in combination.) I am forced to file for SSDI because of my Long Term Disability insurance requires it. Get this I was granted SSDI before LTD insurance was approved for more than 1 year!! They don't go by the same guidelines as the Federal government is what I was told. So even though the SSDI says I am disabled and can not work at any position in the USA the insurance company insists I re-certify every year!!
During this certification process I wake up one morning with my eyes as red as a vampire's if you imagine no white in my eyes only red...it looked like my eyes were filling with blood. I go to a Cornea Specialist (Yes this guys is Dr. A yes his name begins with an A.) He puts me on 40 - 60 mg of Predisone a day for 30 - 60 days. Now I am on my way to Florida for the warm weather and to stay with my brother so he can help give husband and kids a break from caring for me. This was a good trip but every time I tried to wean off the steroids my body keeps swelling and the topical drops for my eyes aren't working to keep it at bay. The orencia isn't working for the RA. Im' on these heavy doses of steroids and I am still flaring daily! All this until we finally get me onto Actemra, off of MTX because of the mouth sores that are uncontrollable to the point I couldn't eat, drink or brush my teeth with out being in extreme pain. I have also gained close to 50 lbs at this point. We start weaning off the steroids again. My body was having nothing to do with it below 20 mg. by this time my I have had three visits to the emergency rooms because I couldn't breath where my throat was literately closing shut. they would inject me with steroids and send me home. On the Fourth visit the ER Doc wasn't sure what to do, so my hubby told him you can admit her find out what is going on or talk to our attorney if anything additional happens to me. So they admit me!
This was an interesting 6 day stay in the hospital. The Gastroenterologist can't figure out whats going on but they put me on acid reflux meds, they insist it is because of the steroids and believes its Cushing Syndrome. The hospital's Endocrinologist put down that I was an OBESE Woman seeking attention. My Rheumy was finally notified after me being in the hospital for 3 days. It was a cluster. This is also after they had called one or two rapid responses to my bed where they have put a tube down my throat and bagged me to make sure I could continue to breathe. Hubby walked in on the middle of the first time and turned green!! He almost passed out. They finally called in my endocrinologist I was setup to see but hadn't seen yet. Dr. J came in and determined it was pituitary failure and put me on different steroids and would start a year long process of weaning me off of them. In the meantime he had increased my Thyroid meds, I was diagnosed with Type II Diabetes while there and High Blood pressure. So I get to go home 6 days after admission and decided I had enough and by this time I am now on Permanent Disability from work and will never return.
So after this experience I am now 50+ lbs lighter, no more diabetes, I still have the Fibro, RA, Scleritis but it is controlled, I also have Vasculitis and now they are still trying to determine why I get Mouth Sores every month and some unexplained rashes.
I am now going to be 50 years old in a few months and have realized the concessions I have made for these diseases of never having natural born children, changed my career from going into medical school because when I was younger they said having RA was a Wheelchair sentence. I literally had a small party when I turned 45 and I wasn't in one...Okay I was using a Walker but not a wheelchair. I called this a success.
Yes I had to give up holding my grand-daughter when she was born. But now I have her in my life every single day. Even when I am away we skype each other, she is 5 now and between her and her brother they are my prides and joy's. My three kids and their significant others are a part of my life. Yes I live in Florida they all live in NJ. I had to give up being a clean freak but we can only do so much. I had to give up my sports car and go with an Arthritis Friendly vehicle. Yes we have had discussions on CreakyJoints.org abut this very subject.
This might have sounded as though I am complaining about my life, but if I had to do it over again I wouldn't change a thing. The one thing these diseases never took from my was my will to live and be happy in life! It didn't take away the man that truly loves me and the children I wasn't able to have myself but learned to love me and consider me their mother also. (I would never take that from their real mom.) I shared the story of my Dad because he was always and always will be a part of my life, and I honor him in his death as I did while he lived.
I have done interviews and written on so many support boards over the years. I have created a local support group for others to get together to discuss our Autoimmune diseases. I have made SO MANY friends in the last several years that I will never forget or ever replace. I might have lost a lot of my friends over the years because of my disease and their lack of understanding. Each one of those losses has made me stronger and made me who I am now!
I hope you have the time to reflect on your own life and not allow this disease beat you, but allow it to help define who you are... as RA Guy says an RA SuperHero!!
All the autoimmune bloggers out there have inspired me and I Thank them for being who they are!
Be Well and Namaste ALL
Join us at AIM-UP Don't go through this Alone! Tess, Maria, Stevi and Laura